My Kid is Not Crazy: a search for hope in the face of misdiagnosis- cinema release (2018)
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- เผยแพร่เมื่อ 2 ต.ค. 2024
- My Kid is Not Crazy tracks the journey of six children and their families as they become tangled in the nightmare of a medical system heavily influenced by the pharmaceutical industry. Here it’s common for a caregiver to prescribe a young child with a Selective Serotonin Uptake Inhibitor (SSRI) but hesitate to prescribe an antibiotic to counteract a potential infectious-based trigger. For some of these kids, what happens after several years is shocking and sad.
I will listen to that mom when I become a doctor in a few years. :)
"Listen to the Mother, Listen to the Mother"!!
TWO DECADES of controversy. Dude. That is gross. This hyper competitive aspect of healthcare is gross. Having a chronically ill child is an enormous struggle. It doesn’t help to have no professional in your corner. I cannot imagine.
Currently my issue😭
It’s absolutely shameful. Heartbreaking. Enraging. Soul crushing. Watching my sweet boy struggle, knowing there is a way to help him, but having that help be just out of reach…. Is such a helpless lonely feeling. It has opened my eyes to just how much evil there is in the world.
It’s not what you think. Pharma does not want children being cured and sent back to their life they want the words of the court taken from parents. That’s where the money is and then they can feed them drugs for the rest of their lives!! The meds themselves will do grave harm and they were all released after very short periods of study call the fast track from the FDA! It’s not an accident
I have spoken every word that came out of these parents mouths. This our story, our journey, our battle.
I came across the 20/20 video, then I watched this whole movie, its now 3:15 am. I think this is what happened to our daughter, been dealing with horseshit, and no help whatsoever for over 4 years. I think she got expelled from like 4 pre schools, so right at the beginning of this movie, it had me thinking.
@@williamhammock4821 I believe this is a place to start. Research docs who know PANDAS and PANS and dont get frustrated with docs that wont take it on. It scares them and sometimes their egos get in the way.
Why will they not accept that, all those narcissistic medical professionals, for God's sake listen to the mothers !!! Get of your high horse and concider the possibility that there is something else that can be done. Thar is what science should be. Inquiring, not stuck to last century ideas
If a virus can affect and cause damage to nearly all organ systems why couldnt it cause mental symptoms and neurological symptoms?Im a guillain barre syndrome and CIDP patient which is an autoimmune disease/reaction of the peripheral nervous system ,and is so commonly developed by a virus,trauma,illness,injury,or even vaccines. These children have a real illness and it needs to be destigmatized. I went misdiagnosed and was literally dying for 2months with paralysis and neurological symptoms. Would never wish being neglected and stigmatized by the medical professionals and staff on anyone.
Why is it so hard for the medical community to accept this?
It reminds me of all the women in the early 1900's in mental hospitals who ended up having syphilis and got cured with penicillin.
Cus they are kids and in our society docs dont trust patients and if they are kids they are even lower on the social ladder. I know pandas is real bcus when i was 37 i got strep and all my symptoms from when i got it at 13 came back. Tics and harm ocd. I had it bad even as an adult but i got better after 6 mths. So in me it heals. And it can happen to adults as well. I was refused antibiotics cuz for a while bcuz of antibiotic resistance it wasnt given out for minor things they felt strep was. I wish those kids could heal like i did. But i think i was saved by being an adult. This is so real.
The ego and greed is palpable in these men denying this - it's disgusting and I would argue it's child abuse and fraud. They should be locked up - not the kids suffering this illness.
Me and my family are trying to figure out what is wrong with my sister and she fits into a lot of these problems. We have seen multiple doctors put her on multiple medications and nothing is working. We finally are able to get the doctor to test for pandas wish us luck. Anybody that has lived or taken care of a person suffering from this i pray that all is good in your life and that you get the help you need.
Im praying for you today dear Brysen that your sister will be healed. I'm praying you have faith in Jesus and read His words from the Bible.
I would look into taking the child to Mayo Clinic in Minnesota. They are amazing.
What are the tests for pandas/PANS?
How did it go, any luck?
SHE *IS* *CURABLE*‼️‼️
‼️‼️‼️‼️‼️‼️‼️‼️‼️
Wonderful documentary, not a dry eye through most of it. Sending so much strength and courage to families affected, the dad on the steps broke me. We have most certainly been there too. Never give up hope. And to the doubting doctors, the parents know their kids better than any textbook you have ever read. Let go of your professional ego and consider the possibilities.
That poor boy Preston. I would NEVER put my kid in a psyche ward. Look how the Dr.s put him in a dark room!! That's freaking torture!! Psychiatric treatment is outdated and barbaric.
You can only say that not living the god damn hell that is this existence. Not sure if your one kid, will kill your other kid.
Preston/Kim didn't have a choice. The ER docs threatened to bring in DCF.
I had PANDAS when I was ten they put me in the teen Pschye ward for over a week despite being that young. I am now an adult and I still have trauma from this
@@cat4517 that’s terrible, I’m so glad my doctor knew about PANDAS and didn’t send me to a psych ward
Society LOVES to blame the individual parents. Society is sick.
I was diagnosed with PANDAS when I was around 5, and I'm lucky enough to live around an hour from Dr. Pasternack. I didn't realize that this was something that other people had until a few years ago. I'm so happy that you are bringing awareness to PANDAS and PANS.
How are you doing today?
@@jeannineduncan2982 I'm better, but I still have motor tics and a lot of other symptoms that will never go away. thank you for asking
I also happen to live really close to a really good PANDAS doctor, if I had seen another doctor who didn’t think to test for strep I would’ve become a whole lot more sick
Amanda's transformation was so amazing. I'm so happy that she got better
To :Preston’s Parents , my heart ❤️ goes out to your Family !!
It makes me so ANGRY 😡 , that they took the liberty against his & your will !!
Suffering from separation anxiety 😟, and putting him in the quiet room . And him saying that they ate catfish & he didn’t eat dinner 🥘 ???
That really upset 😠 me , & all the PSYCHOTROPIC DRUGS . That was given to him ??
It’s JUST WRONG 😑 , I’m HAPPY 😊 PRESTON is OUT if that PSYCH WARD !
He SHOULD have NEVER been there in the FIRST place !!!
My hope for all these children afflicted with PANDAS & PAN , that Dr., LISTEN 👂 to the PARENTS ! They know their children , they live with them !
Thank you 🙏🏿 for sharing your stories , it will help so many children & parents .🥰❤️❤️🙏🏿🥰😊😊🤗🤗🤗🤗🤗🤗🤗🤔
It is so bizarre that you can just clamp down in this ideology that strep cannot cause ocd, then why not that strep (and other infections) triggers inflammation that in turn can cause ocd type behavior to develop? It is excellent to be skeptical. What is not okay is to be so extremely cynical that you become the antithesis of skeptical. Clearly it is a slippery slope.
Well said
Here Here, great comments 🇬🇧
I felt like I was watching home movies watching this. Very few Dr's support or believe in it around our area, insurance doesn't cover the ones that do. We have been begging for help for years and getting nowhere. This needs to stop, our children need help!!!
My heart goes out to all affected by this!
I just cannot understand why the disconnect. Our immune systems attack healthy tissue in the course of other diseases, and disorders. I’m not sure why this is such a controversial thing. As the mother of a toddler that suffered from strep related bacteremia in infancy, this scares the ever living hell out of me. I do wonder what the predisposition is. I had many bouts of strep throat as a child, and it was a non issue. Is this a byproduct of the over prescribing of antibiotics? Someone really needs to get to the bottom of that. Are these infections adapting, or are our immune systems evolving to react this way now? It is very unfortunate that ego is running the show in many instances. Children are suffering though. If that isn’t motivation enough to make all considerations, I’m not sure what the heck is. We are just pumping kids full of powerful stimulants, sedatives, antipsychotics etc. in lieu of ibuprofen, and antibiotics. What is the logic?
It is the same issue as Covid alternatives...it all boils down to big pharma $$$$$$$$$$ and power.
It likely due to the evolution of medicine and psychology as two different fields of study, ie more of a historical basis. Hopefully will disappear in time, like maybe alzheimers will be gone in 10 years because they solved the biological factors.
Thank you for these posts. I am working on a new film and would like to discuss with you if you are open to it. My email is tsorel@ufl.edu.
The HLA-B27 gene marker is highly associated with anklosing spondylitis and other autoimmune conditions. I have it, as well as two out of my three sons and we all have autoimmune disorders. They mention the HLA gene marker in this video, I am highly encouraged that they are finally figuring out that this is physical, not mental. Their immune systems have been triggered by the bacteria, and that bacteria crossed the blood-brain barrier.
Why is the onset in childhood? Can it start in adults too? Most medical pioneers were ridiculed in the past but they kept fighting and now we know they were right. Keep fighting
in adults= yes.
From the moment I saw Mike Ulicki’s interview. My heart stopped. PANDAS robbed us of our son. Thank you for making this documentary and shining a light on this medical taboo. My heart goes out to all of you-all of us-all of the children. We need help.
My son had Pands few years ago, the regular Drs. didn't do anything to help him. he too stopped eating, the twitching, phobia, anxiety, range dehydration and then months later he started having seizures. Drs. wanted my son to go to a group home, he was only 11, I'm so glad I disagreed. my son recovered from Pandas. thank God.
with what treqatment?
This is so heartbreaking to watch, I want to finish watching it since I have a little one, but I just can’t….those poor children and parents
"Any time a new idea is propagated, there is an opposition to that idea because it takes people out of their comfort zone."
Speaking to the power of the pharmaceutical companies, not that many people are aware that cures for different cancers have been discovered, but the doctors and researchers in the US can't get the FDA to review. Conclusions drawn - right or wrong - from the refusals are that the agency is heavily influenced by the drug companies. Approved cancer drugs are huge money-maker's.
After watching this we paid for a consultation with Dr. Kiki Chan. He was terrible, arrogant, and reckless with diagnosis and suggestions. Absolutely the worst doctor we spoke to throughout our PANS journey. He did not even read our labs, or look at our case and suggested Steroids, Lithium and other wacky paths. Do not pay for his .consult it is not tailored to your child
THANK YOU SOOOO MUCH FOR DOING THIS GREAT DOCUMENTARY!!!!
My son has autism and it has been rough. But OMG!! if I had to go through what these families went through from the medical community I would be so insane and depressed!!
My son has autism and pans
@@simsrizvi Same. Our son has both autism and PANS. I asked his pediatrician about PANS when he was 2. He blew me off. Our son finally got diagnosed this year and he’s almost 10.
@@jennifermulhall8496 has he started an antibiotic treatment yet? If so, any results? We are in the same boat, and now our son is 10. Diagnosed HFA, but the consistencies with Pandas are high. We are communicating with the same U of Minnesota (like in the video) and a local Psyche DR and author who believes in Pandas.
As one who has twice suffered encephalitis, and experienced lingering, unpleasant sequel effects, the
cause and effect here seem entirely credible to me.
So glad and thankful for this documentary
I'm parent of pans/pandas child ...
The suffering is real but o hope is out there..
Thank you to Dr. Sweeto for discovering pediactric autoimmune neuropsychiatric disorder associated with streptococcus as I was watching. I could relate to these parents, when one of the children was very young she repeatedly got streptococcus infection and ran to the emergency room day in and out. Amanda, Preston and Greta seeing them that got 100% better is amazing. The medical field now is a work in progress still with so many things that need to be readjust and reform. One should stop the insurance companies caring for our sick people and let the doctor do their job.
I'm a bit sad this documentary focusses only on childeren. Adults also suffer from this in the same way way.
This is probably going to make me cry bc of my own struggles with PANDAS and chronic spirochetes but I’m going to watch it anyways ✌️
Going through PANS right now with my 5 year old caused by lyme infection and COVID that was the gasoline to the fire. Thank you for making this documentary and bringing this condition to light!!
How are you treating Lyme disease?
"In that scenario, to reach for an ssri first, in my mind, is bad medicine. This child has a post infectious encephalopathy until proven otherwise."
With the rise in Strep A cases in children worldwide since C-19 this is even more important to see now.
Very powerful and informative - thank you.
i had pandas ever since i was 7 it was the worse thank God puberty helped me but i still suffer from extreme anxiety and ocd and also my tics are coming back from the anxiety
Sue the doctors, sue the hospitals, sue the insurance companies.
That will get you no where. You will discover that the problem with PANDAS is everybody is right and everybody is wrong.
I came here to learn more because my best friends 5yr old daughter has been recently diagnosed with PANS. I just feel helpless to do anything for her as her friend. I know she is struggling to just keep her head above water and she is mentally exhausted and frustrated over this and the lack of help they are getting form the medical community. Its just heartbreaking for the parents and awful for these children.....God bless them all. 😞
I am also here because of a friend's precious son has this. Their has been some improvement with their son. It breaks my heart for them and any family that is going through this.
You can be her friend and give respite care when needed.
Ruqya, please look into this.
That 20 yr. Old Drew is brilliant and so articulate, impressive young lady. I think she will go far in life.
J. Mink and the other doctors will meet their makers some day and will regret taking the position that they have.
Thanks to everyone in the documentary for sharing their experiences, and a special thanks to Gary for his narrative.
Incredible documentary about a devastating disease. Thank you so much for making this film!
This is so common in autism it is insane. States are passing statues that insurance companies have to cover IVIG. I am lucky to be in one of those states. Our daughter had horrible PANDAS. We had to diagnosis her as parents and I make sure it is on every medical chart and IEP she has. We treated successfully with low dose immunotherapy. I don't think long term antibiotics and steroids are a great option. It is a band-aide but doesn't fix the underlying issue which is immune overactivation and obviously antibiotics cause many other issues.
May I ask what doctor in what state prescribed immunotherapy for your child?
We have 5 going through this (PANS). This is completely spot on. My kids, due to long term exposure to sulfur (paper mill) and black mold that we didn't know about in our homes developed this. It is often like demon possession. They can look so lost. Hallucinating. Suicidal threats. Attacking people with knives. Neighbors calling police and DHR on us because of things they saw and heard from our kids during a flare up. They are completely different kids than they used to be. We actually have found some resolution in going through a practice in California, naturally. And I am so so thankful. At times, I'm not sure if we as parents will make it through, much less my kids....
How are you doing now? my grandson has severe PANDAS and trying to get the right help and support has been hell for my daughter. I can not imagine having 5 going through this.
Where are they located? Maybe we can help connect them. We are in a little better spot, though far from healed. I'm so sorry for your daughter and grandson. I think this is going to become a much bigger deal over the next few years. We meet families all the time with kids who demonstrate these things and they don't know what to do.
Could severe hoarders also be afflicted?
I cannot comment.
Yes, hoarding is a compulsion that is common with ocd. Ocd is one of the main diagnostic criteria for pans/pandas.
I had crhonic strep throat for 2 years straight when I was 16-18. I am so so happy this didnt happen to me. Why is it more prevalent in younger kids?
auto immune disease affects everyone differently.
PTSD…yes that’s correct.
ALSO SPECT SCAN! Concussions
20/20 brought me here
Yes study.... sadly with the behavioral extreme the child is a danger to themselves and others ..... get better care ....
I have pandas it sucks hell
🙏🏽🙏🏽🙏🏽
It breaks my hearth to see the childrens in that state.
I sincerly hope things are getting better since 3 years.
Something I don't know is does this happen w/ penicillin or other antibiotics? I know some have allergies, but do they need to go back to basics for those who don't? I used to use injection w/ both my kids as I learned w/ the 1st, it was easier than chasing him down w/ that disgusting liquid & the injection was good for 30 days, plus it took the pain away quicker.
I do remember the time I was so sick, I get the phone call & on the other end heard, Both positive.
In my feverish state I said, Both? You mean him too? He has no symptoms.
That was the 1st time he was injected w/ Penicillin. Oh, so much easier than the last time he had it!
The joy of preschools! 🙀😸
Dear parents - there are other ways to get safe antibiotics if your pediatrician refuse to prescribe it. Unless your child has allergies to penicillin, I think it’s worth trying. Your child may get thrash or yeast infection at worst but I think that’s a small price to pay. It is imperative that you get treatment for your child soonest possible.
Parents need to work with a experienced PANDA/PANS provider.
Are there any updates on the state of the kids in this video?
I've never heard of this before. Hear to learn
This sounds just like the neuroimmunology of autism. I'm autistic, and I struggle with many of these symptoms featured in this video.
I am sorry about your autism. PANDAS/PANS symptoms wax and wane. Autism does not.
Autistic people can get pans/pandas.
You probably have both or only pandas
New disorder discovered?
I feel like I have this as I fit every symptom, any advice??
There are many PANDAS/PANS advocacy groups. They can guide you to a qualified provider.
This is a treatise on a disease process by surprisingly defensive professionals. It would have been much more educational had the alternative science, be it neurological, autoimmune or inflammatory processes, been presented.
An alternative diagnoses in an indeterminate field is usually embraced by those not personally invested.
When you hand the baton to the child the orchestra is thrown into confusion, no matter how well meaning or professional the orchestra may be.
When I was 10 years old had a sudden onset of PANDAS syndrome I developed a sudden OCD around food and refused to eat hardly anything. I had to weigh myself almost every 30 minutes, and I had weird tics like jumping at a certain spot in the hallway all the time. My PANDAS resulted in me starving myself to the point where I had to go to the hospital for malnutrition twice, which resulted in me being put in a clinic for teens with anorexia. I was put in the psych ward for teens twice being only 10 at the time they didn't know where else to place me. My memories of the psyche ward still haunt me to this day. I finally got on antibodies during my second hospital visit about a 1 year and a half into having PANDAS and like magic, I got better my tics went away and I was able to eat again. But the trauma that I have from this time will never go away.
Oh dear dear Cat - I am soooo deeply sorry for you that this experience happened to you! This is not right and is my worst nightmare for my baby. I am praying that you would recieve freedom from the thoughts that still haunt you, that you would rise up and live a vibrant full amazing life despite how people utterly failed you. You are so important and I am so thankful you got freedom from the PANDAS symptoms. I just wish I could give you a hug right now. Sending you hugs in the spirit and prayers that the trauma would (against all odds) leave you!
OM MANI PADME HUM
Are you sure these kids don't ever have these meltdowns for attention???? That's why you should NEVER withhold love and affection from them and give them plenty of attention. Yes, I'm sure. A kid wouldn't fake ill and be tied to a bed just for attention.
I have PANDAS and I never did any of it for attention, my parents are very loving
It is a good question. I do believe some children may manipulate their parents to get what they want but for the most part this is easy to detect in a true PANS/PANDAS situation.
Yikes, this response is HORRIFIC. I pray that you never have kids.
Dude I got strep throat almost every year when I was a kid and nothing like this ever happened to me, wtf are they doing to these kids?
You should do more research. It isn’t everyone!!!
Only certain kids (typically with hyper-immune systems) are susceptible,
That's right, if you haven't experienced something means it doesn't exist (insert sarcasm...)
Fuck big pharma
Some people have a genetic predisposition, do you research before you comment on a terrible chronic illness
Their entire homes are toxic with a fricken smart TVs! And these professionals know this. Disgusting!
That doesn't make sense.
GO LOOK UP: Saving Sammy-The Boy Who Caught OCD!
Millions of people/kids get strep with no lingering issues. This seems like a reach.
Yes, and millions of people eat peanut butter everyday with no side effects but that doesn't change the fact that there are people who can die from even inhaling peanut dust. For some children the Strep crosses the blood brain barrier. Why it crosses for somecand not others we don't really know. It could be that the strep went untreated too long and eventually settled in the brain. There are some kids that just don't exhibit any symptoms when they get strep, so it goes untreated and they develop PANDAS. There are some kids that could have had an injury to the blood brain barrier or poor development of BBB due to external factors. This damage to the BBB allows infection to cross.
Strep is a very insidious bacteria. It can cause many ailments and cross the blood brain barrier. It causes scarlet fever which can blind and deafen a child.
There are genetic predispositions
There are more than 130 different strains of strep, some far more aggressive than others. Is Sydenham's Chorea a reach?
Millions of people also have autoimmune diseases caused by pathogens. Fact. Educate yourself