Discover and read the best of Twitter Threads about #pans
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⚠️ This is an honest 🧵 about #PANS triggered by #SARSCoV2 it is one of the many conditions that appear to sit under the ☂️ term of #LongCovid.
We see many children through our support services who receive this diagnosis.
Not all children with LC experience PANS.
@PandasPans
We see many children through our support services who receive this diagnosis.
Not all children with LC experience PANS.
@PandasPans
@threadreaderapp unroll please
For more specific information about #PANS please see @PandasPans
For support with all #SARSCoV2 triggered illness (Long Covid) please join our community.
You are not alone.
#LongCovidKids
@MichaelRosenYes
longcovidkids.org/support-servic…
For support with all #SARSCoV2 triggered illness (Long Covid) please join our community.
You are not alone.
#LongCovidKids
@MichaelRosenYes
longcovidkids.org/support-servic…
❗️trigger warning ❗️
Paediatric acute-onset neuropsychiatric syndrome secondary to Covid-19. (PANS)
Anna is very distressed in these videos.
I have met Anna and she is a quiet, observant girl.
She should be enjoying life right now.
Instead, due to Covid, she has lost years.
Paediatric acute-onset neuropsychiatric syndrome secondary to Covid-19. (PANS)
Anna is very distressed in these videos.
I have met Anna and she is a quiet, observant girl.
She should be enjoying life right now.
Instead, due to Covid, she has lost years.
Only due to her Mum’s persistence has she got a diagnosis and treatment.
This happened before Covid to children BUT we don’t know how many children have been affected now.
Who is counting this Covid sequelae? CAMHS? Paediatrics?
It’s hard enough to find a dr to diagnose it.
This happened before Covid to children BUT we don’t know how many children have been affected now.
Who is counting this Covid sequelae? CAMHS? Paediatrics?
It’s hard enough to find a dr to diagnose it.
It is caused by inflammation in the brain.
It’s autoimmune- think of a condition like rheumatoid arthritis but the brain is affected not the hands
It is often misdiagnosed as primary mental health disorder.
It’s autoimmune- think of a condition like rheumatoid arthritis but the brain is affected not the hands
It is often misdiagnosed as primary mental health disorder.
What's it like to have a kid with #PANS?
Not these🍳🍳
👉 Paediatric Acute-Onset Neuropsychiatric Syndrome.
In March '20 we had #COVID19 for the 1st time. #SARSCoV2 triggered #LongCovidKids & #PANS. We've since had 2 further infections. Each one has made her worse.
🧵
1
Not these🍳🍳
👉 Paediatric Acute-Onset Neuropsychiatric Syndrome.
In March '20 we had #COVID19 for the 1st time. #SARSCoV2 triggered #LongCovidKids & #PANS. We've since had 2 further infections. Each one has made her worse.
🧵
1
I can't describe #PANS because words don't capture the horror of your sweet, shy, polite little girl turning into what can only be described as a cross between Samara from The Ring and a full on banshee vampire intent on vengeance and destruction.
TW: Video IS distressing.
2
TW: Video IS distressing.
2
This is not bad behaviour. This is caused by a misdirected immune response to infection = widespread inflammation, including in her brain. Her brain is on fire.
She has absolutely no control. She screams until she wretches (and on occasion, vomits) It's scary for her. #PANS
3
She has absolutely no control. She screams until she wretches (and on occasion, vomits) It's scary for her. #PANS
3
This case report is of interest for a number of reasons…..Case report: Varicella associated neuropsychiatric syndrome (VANS) in ... sciencedirect.com/science/articl… 1/n @PandasPans @ASPIREpans @PANDASPPN
A) the children present with a #PANS (paediatric autoimmune neuropsychiatric syndrome) presentation. But the authors have created yet another new term “VANS”, presumably to avoid the controversies surrounding PANS 2/n
B) the subacute/acute onset of 3-6 weeks. Many parents are told their child can’t have PANS because onset took longer than 3 days - which has become the default definition of “acute onset”. Note that endres et al 2022 defined acute onset as <3 months 3/n
December 2022 round up of #PANS #PANDAS - relevant or related peer-reviewed papers and media articles that may be of interest. Complied with @np9000. We hope you find it useful. (1/29)
@PandasPans @theEXPANDAssoc @BPNA_org @ASPIREpans @PANDASPPN @CAMHSNetwork @NeuroimmuneFDN
@PandasPans @theEXPANDAssoc @BPNA_org @ASPIREpans @PANDASPPN @CAMHSNetwork @NeuroimmuneFDN
Prevalence of pediatric acute-onset neuropsychiatric syndrome (PANS) in children and adolescents with eating disorders. Aman, M. et al. J Eat Disord 10, 194. 2022. jeatdisord.biomedcentral.com/articles/10.11…
(2/29)
(2/29)
Group Psychotherapy for Parents of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome. Ellerkamp, H. et al. J Clin Psychol Med Settings. 2022. link.springer.com/article/10.100…
(3/29)
(3/29)
🚨 Did you know common infections can cause severe mental illness that’s mostly overlooked by MDs?
@krisnewby wrote abt stunning case of healthy teen dx’d w schizophrenia after bug bites transmitted #Bartonella.
He was committed to psych ward...
nowthisnews.com/swamp-boy
@krisnewby wrote abt stunning case of healthy teen dx’d w schizophrenia after bug bites transmitted #Bartonella.
He was committed to psych ward...
nowthisnews.com/swamp-boy
He failed all major psych drugs & only got worse.
His dad had hunch that docs were missing something important & began reviewing literature.
He presented MDs w his findings of infection-mediated illness #PANS.
MDs wrongly dismissed him, insisted it was psychiatric.
His dad had hunch that docs were missing something important & began reviewing literature.
He presented MDs w his findings of infection-mediated illness #PANS.
MDs wrongly dismissed him, insisted it was psychiatric.
Dad was right.
His research led him to the work of brilliant Dr Ed Breitschwerdt from @NCStateVetMed , 🌍 leading expert on bartonella, who I interviewed last week (will post link).
He contacted Dr B whose lab found bartonella in his blood.
His research led him to the work of brilliant Dr Ed Breitschwerdt from @NCStateVetMed , 🌍 leading expert on bartonella, who I interviewed last week (will post link).
He contacted Dr B whose lab found bartonella in his blood.
Here is the round-up of #PANS #PANDAS and related publications and media articles released in September 2022. Collated by myself and @np9000.
@PandasPans @ASPIREpans @theEXPANDAssoc @NeuroimmuneFDN
#PansPandasAwarenessDay
🧵1/17
@PandasPans @ASPIREpans @theEXPANDAssoc @NeuroimmuneFDN
#PansPandasAwarenessDay
🧵1/17
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Group a Streptococci: Etiopathology and Diagnostic Challenges. Hutanu, A., et al. Cureus 14, no. 8 (Aug 2022): e27729. pubmed.ncbi.nlm.nih.gov/36106298/
(2/17)
(2/17)
Back to the Future: The Role of Infections in Psychopathology. Focus on OCD. Della Vecchia, A. & Marazziti, D. Clin Neuropsychiatry. 2022 Aug;19(4):248-263. doi.org/10.36131/cnfio…
(3/17)
(3/17)
Across the world, today is #PANS #PANDAS awareness day. My son developed #PANS in December 2018. I will never forget the day and time it first presented itself. I did not know at that time how his and his family's lives would be irrevocably changed 🧵
Right now, my son is doing well. This is because of the help I found via the support network gathered around the UK #PANS #PANDAS charity, PANS PANDAS UK @PandasPans
🧵 Our guidebook provides information, support and signposting.
📕 Chapters for young people, parents & caregivers & schools.
🔬Evidence based information & case studies
🤗 Nobody has to feel alone.
To learn more ⬇️
longcovidkids.org/support-guide
#LongCovid #LongCovidKids
📕 Chapters for young people, parents & caregivers & schools.
🔬Evidence based information & case studies
🤗 Nobody has to feel alone.
To learn more ⬇️
longcovidkids.org/support-guide
#LongCovid #LongCovidKids
Long Covid Kids started as a grassroots organisation in September 2020.
In October 2021 we became a registered charity.
Our patron is beloved children’s author @MichaelRosenYes
#LongCovidKids #LongCovid #MichaelRosen #Charity #Support #Children
In October 2021 we became a registered charity.
Our patron is beloved children’s author @MichaelRosenYes
#LongCovidKids #LongCovid #MichaelRosen #Charity #Support #Children
With the support of experts, scientists, paediatricians, doctors, nurses, researchers, advocates, occupational therapists, physiotherapists teachers & educational psychologists our team of volunteers created a guidebook to raise awareness & educate.
#LongCovidKids #LongCovid
#LongCovidKids #LongCovid
This is the kind of paternalistic, unscientific nonsense that #MECFS #Lyme #Fibromyalgia #HSD #POTS #MCAS #Pandas #Pans #EDS #VaccineInjured #FQtoxicity patients have endured for decades. Now it’s the turn of #LongCovid
I’m going to make an offer to our colleague. Hopefully @DrKGregorovic can convey this message as I am blocked. Happy to have a Zoom coffee with both of you. We can examine
-the paper @awgaffney has tweeted & discuss the flaws
-the evidence for biomedical causation in #MECFS & LC
-the paper @awgaffney has tweeted & discuss the flaws
-the evidence for biomedical causation in #MECFS & LC
-the evidence for the ‘false sickness beliefs’
-the quality of the studies advocating exercise & talking therapies
-studies looking at the outcome of exercise in #MECFS & #LongCovid populations
-cardiovascular & other outcomes in #LongCovid
I think that is fair? Let me know
-the quality of the studies advocating exercise & talking therapies
-studies looking at the outcome of exercise in #MECFS & #LongCovid populations
-cardiovascular & other outcomes in #LongCovid
I think that is fair? Let me know
Been experimenting with a brief monthly round-up of publications (peer-reviewed & media articles) that may be interest #PANS #PANDAS community. Small scale stuff, but there may be scope to turn this into a mail list so all the links would conveniently arrive in your inbox 1/n
March's round-up illustrated in the two jpegs above. Thank you @np9000 for being my wingman!
OCD in Pans/Pandas in Children: In Search of a Qualified Treatment; a Systematic Review & Metanalysis. Cocuzza, et al. Children 9, no. 2 (2022). dx.doi.org/10.3390/childr…
#PANS #PANDAS 2/n
OCD in Pans/Pandas in Children: In Search of a Qualified Treatment; a Systematic Review & Metanalysis. Cocuzza, et al. Children 9, no. 2 (2022). dx.doi.org/10.3390/childr…
#PANS #PANDAS 2/n
There follows:
Neuroinflammation in a Rat Model of Tourette Syndrome. Zhongling, Ke, Chen Yanhui, Chen Guofeng, and Liu Yanyan. Original Research, Frontiers in Behavioral Neuroscience 16 (2022). doi.org/10.3389/fnbeh.…
3/n
Neuroinflammation in a Rat Model of Tourette Syndrome. Zhongling, Ke, Chen Yanhui, Chen Guofeng, and Liu Yanyan. Original Research, Frontiers in Behavioral Neuroscience 16 (2022). doi.org/10.3389/fnbeh.…
3/n
💈On the day the @ons report 26,000 CYP have symptoms for at least a year (⬆️ 3000 from last mth)
we received an email from @10DowningStreet in response to our visit on April 1st
It confirms the concerns of the children⬇️
"We feel ignored"
@FYI_SkyTV
we received an email from @10DowningStreet in response to our visit on April 1st
It confirms the concerns of the children⬇️
"We feel ignored"
@FYI_SkyTV
April 1st - 12 #children living with #LongCovid traveled
to #london to deliver their own letters documenting their #pain, loss of #sight, #mobility, organ damage, diagnosis of #PANS #MECFS #FND #POTS #MCAS and the detrimental impact it has had on their lives.
#LongCovidKids
to #london to deliver their own letters documenting their #pain, loss of #sight, #mobility, organ damage, diagnosis of #PANS #MECFS #FND #POTS #MCAS and the detrimental impact it has had on their lives.
#LongCovidKids
100+ page guide providing evidence-based information on #LongCovid in CYP from industry experts, research, and statistics from @GOVUK @ONS.
Did anyone read it?
We were assured @BorisJohnson would receive it.
#LongCovidKids
Did anyone read it?
We were assured @BorisJohnson would receive it.
#LongCovidKids
It has been an honour to walk alongside my friend & colleague of 21 years @BinitaKane & her daughter Jasmin on their courageous & inspiring journey. #LongCovid in adults children is real & serious. There are treatments available- sadly only for a fortunate few #TeamClots 1/n
(Everything I say is with the express permission of @BinitaKane). Jasmin is not the only child with #LongCovid who has been shown to have microclots & hyperactivated platelets. They are a consistent finding in kids & adults who have travelled for treatment to Germany & SA 2/n
Globally 100m are affected by this vile illness. In the U.K. alone this figure is estimated to be 1.8m, with 2/3rds reporting an adverse impact on their daily activities. 1% of primary & 2.7% of secondary school children fulfilled the criteria for #LongCovidKids 3/n
The British Association of Social Workers have published Fabricated & Induced Illness & Perplexing Presentations Practice Guide basw.co.uk/resources/fabr…
(PP ~ MUS) 🧵1/20
@doctorasadkhan @NurseDiane2020 @PandasPans @LongCovidKids @FiGullonScott @BASW_UK
(PP ~ MUS) 🧵1/20
@doctorasadkhan @NurseDiane2020 @PandasPans @LongCovidKids @FiGullonScott @BASW_UK
This well-considered & positive document provides guidance to social workers (SW) to enable them to adopt professional curiosity & respond ethically to FII concerns. The following points are some that I feel are relevant to #PANS #PANDAS #LongCovid #MECFS #EDS communities 2/20
lt is recommended SW need to be aware of the lack of evidence for currently used indicators for FII & perplexing presentations and the high incidence of these indicators identifying children where illness is neither fabricated or induced #PANS #PANDAS #MECFS #EDS #LongCovid 3/20
1) This is Ethan, now aged 15, and ill for 18 months. He would like to be listened to and believed. He is certain that he is not anxious and that he definitely does not have "anything to gain" from debilitating daily symptoms.
#AlwaysOurBabies #LongCovidKids #BacktoSchool2021
#AlwaysOurBabies #LongCovidKids #BacktoSchool2021
2) Anna caught #covid in April 2020, 4 weeks later she had a terrifying "inflammatory response" & was so ill. The hospital refused to see her. She has #covid triggered #CFS & #PANS & been ill since. She's not the same happy, energetic little girl she was. 💔 #AlwaysOurBabies
3) This is Evie Mae, it doesn't seem two minutes ago that she was this little.
Now she's 13 and towers above me. Evie says she's tired of being tired.
Evie Mae has crippling #longcovid.
#longcovid #BacktoSchool2021
#longcovidkids #AlwaysOurBabies
Now she's 13 and towers above me. Evie says she's tired of being tired.
Evie Mae has crippling #longcovid.
#longcovid #BacktoSchool2021
#longcovidkids #AlwaysOurBabies
1) #longcovidkids Group post.
16 mths of fighting to get a diagnosis.
“Finally had in writing confirmation today from my kids #neurologist to my #GP that they both have #PIMS / #MISC, along with #postcovid immune mediated neuropsychological syndrome/#PANS and #longcovid,
16 mths of fighting to get a diagnosis.
“Finally had in writing confirmation today from my kids #neurologist to my #GP that they both have #PIMS / #MISC, along with #postcovid immune mediated neuropsychological syndrome/#PANS and #longcovid,
2) Took 16 months of fighting for them to get heard!! How many of our children have some form of PIMS/MISC that has gone unacknowledged and untreated for so long!
I think there’s so many unrecognised by medics to greater or lesser degrees but it’s all the same
I think there’s so many unrecognised by medics to greater or lesser degrees but it’s all the same
3) - Inflammation & immune mediated response!
My children had a 40 + temp for 3 wks solid and dangerously low oxygen levels (85%) and struggled to breathe every day, blue lighted to hosp yet medics couldn’t wait to get us out and gave us virtually no help. I
My children had a 40 + temp for 3 wks solid and dangerously low oxygen levels (85%) and struggled to breathe every day, blue lighted to hosp yet medics couldn’t wait to get us out and gave us virtually no help. I
Several children in our group have had a diagnosis #PANS triggered by Covid infection.
💙PANS = Paediatric Acute-onset Neuropsychiatric Syndrome💙
A sudden onset of:
👉 OCD symptoms and/or severe eating restrictions
👉 Cognitive, behavioural, neurological symptoms (at least 2)
💙PANS = Paediatric Acute-onset Neuropsychiatric Syndrome💙
A sudden onset of:
👉 OCD symptoms and/or severe eating restrictions
👉 Cognitive, behavioural, neurological symptoms (at least 2)
😢"It’s like my child woke up as a
completely different person!"😢
#PANS kids display a dramatic personality
change, some #OCD, tics or issues with
food, together with a number of other symptoms
usually following some kind of infection.
panspandasuk.org
completely different person!"😢
#PANS kids display a dramatic personality
change, some #OCD, tics or issues with
food, together with a number of other symptoms
usually following some kind of infection.
panspandasuk.org
In very young children, #OCD can display as intense anxiety or fears.
Symptoms can be extremely alarming:
👉Anxiety/depressive moods
👉Aggression and/or irritability
👉Severely oppositional behaviour/regression
👉Sensory & motor abnormalities
👉Hallucinations and/or psychosis
Symptoms can be extremely alarming:
👉Anxiety/depressive moods
👉Aggression and/or irritability
👉Severely oppositional behaviour/regression
👉Sensory & motor abnormalities
👉Hallucinations and/or psychosis
#Aadhaar is a merely a number that is assigned to demographic and biometric data that is never certified, verified, or audited by anyone.
Why then is everyone being coerced to get an Aadhaar and link it to a PAN that already provides verified tax history?
This thread reports:
Why then is everyone being coerced to get an Aadhaar and link it to a PAN that already provides verified tax history?
This thread reports:
In 2017 there were only 1,544 fake #PAN numbers according Minister of State for Finance, Santosh Kumar Gangwar, then @FinMinIndia, http://164.100.24.220/loksabhaquestions/annex/12/AU980.pdf
When Former Supreme Court Justice, P.B. Sawant had already highlighted that there are at least 580 million (58 crore) suspect #Aadhaar cards why would @finminIndia and @cbdt want to link #PAN to Aadhaar which increases the chance of fake PANs?
indianexpress.com/article/opinio…
indianexpress.com/article/opinio…
#EPWConversations: Today, @AnupamSaraph and @sanjana_krishn will be talking about their work on PAN and Aadhaar linkage from epw_in’s handle. We invite you to join the conversation and ask questions. They will present their paper in this #thread.
Also, you can view their responses to questions and comments in this thread:
