Archive for the ‘PANS’ Category

PANS PANDAS & Autoimmune Encephalitis – Rickert Hong

https://www.corebrainjournal.com/2019/01/292-pans-pandas-autimmune-encephalitis-rickert-hong/

292 PANS PANDAS & Autoimmune Encephalitis – Rickert-Hong

PANS, PANDASPhoto by Mohamed Abdelgaffar from Pexels

Urgent Childhood and Adult Psychiatric Details So Often Overlooked

So many kids these days have rages, OCD, tics, aggressive behavior, prolonged tantrums and anxietyall living downstream from PANS, PANDAS and Autoimmune Encephalitis.

If these profound and puzzling symptoms prevail you must look into PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep) and Autoimmune Encephalitis – especially if your child exhibited sudden behavioral changes or a markedly unpredictable developmental regression.

Listen up; Maria spells out your options.

Autism, ADHD, Executive Function, and Sensory Processing Disorder

Even kids with autism, ADHD and Sensory Processing Disorder should be evaluated for this condition as some practitioners believe that nearly 2/3 of kids with neurodevelopmental disorders also suffer from PANS. As you listeners know, and those of you who have followed our updates over the years, immunity is a relentless and ubiquitous focus in my offices for treatment failure for many years.

The good news: if you identify it correctly and take the necessary steps treatment failure will often, quite surprisingly, turn around.

Note Well

  • PANS is an umbrella term that includes diagnoses such as Lyme disease, PANDAS, PITANDS (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders), and Autoimmune Encephalitis — all of which describe a condition marked by concerning psychiatric and physical symptoms that often, but now always, appear suddenly.
  • Children in the U.S. now suffer from PANS at a very concerning rate – it’s far more prevalent than many assume.

In this CBJ/292 Episode, We Discuss

  • What PANS, PANDAS and Autoimmune Encephalitis are and why so many children are being diagnosed with these conditions.
  • What causes PANS.
  • Why PANS is so commonly seen in children with autism.
  • How PANS is treated.
  • How to get to the root cause(s) of PANS.
  • What parents of children with PANS have done to bring their children back to good health.
  • What leading PANS experts have to say about the cause and treatment of PANS.

Maria co-wrote this book with remarkable colleagues at Epidemic Answers: Beth Lambert, Roseann Capanna-Hodge, Lauren Stone and Jennifer Giustra-Kozek. We’re excited to present this resource to you in your quest for improving your child’s health!

Connections

CBJ Experts On Similar Insights

 

About our mission, Dr. Charles Parker

Our CBJ hosting objective is critical: upgrade mind and brain data through informed dialogue with neuroscience experts to build more predictable, more comprehensive, more understandable solutions for you and your family. Today’s technology drives significantly improved mind-prognosis – beyond traditional psychiatric measures. Inaccurate labels, speculation, and guesswork are out – critical thinking, data, and measurement are in. Let’s work together to connect advanced biomedical wisdom with everyday street reality. 

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More on PANS/PANDAS/Autoimmune encephalitis:

https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/

https://madisonarealymesupportgroup.com/2018/12/17/my-kid-is-not-crazy-study-shows-1-3-kids-with-pans-have-hallucinations/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/

https://madisonarealymesupportgroup.com/2018/01/05/scary-side-of-childhood-strep/

https://madisonarealymesupportgroup.com/2018/11/06/diagnosing-treating-autoimmune-encephalitis-in-patients-with-persistent-lyme-symptoms/

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/  Boy’s Lyme Disease Morphs into Autoimmune encephalopathy.  It took 10 years and 20 doctors to find out 12-year-old Patrik had Lyme disease. Just 4 months later the doctors discovered he also has a condition where his immune system attacks his brain.

https://madisonarealymesupportgroup.com/2019/01/24/toddler-suffering-from-hallucinations-seizures-diagnosed-with-rare-brain-disease/

Spread the word!  Many doctors are still in denial about these conditions.

 

 

 

PANS/PANDAS A Survivor’s Story

 Approx. 12.5 Min

PANS/PANDAS A SURVIVOR’S STORY

PANS/PANDAS is still misunderstood and undiagnosed.  Many doctors are completely clueless.  According to one Wisconsin doctor, 80% of his PANS/PANDAS patients also have Lyme/MSIDS.  Often an infected tick bite can trigger it.  It’s a perfect storm of events that can hijack your child.  Please learn all you can and share the information prolifically.  Children are losing their childhoods to this monster.

For more:  https://madisonarealymesupportgroup.com/2018/12/17/my-kid-is-not-crazy-study-shows-1-3-kids-with-pans-have-hallucinations/

https://madisonarealymesupportgroup.com/2018/10/29/neuropsych-disorders-in-kids-an-interview-with-co-founder-of-the-stanford-pans-clinic-dr-kiki-chang/

https://madisonarealymesupportgroup.com/2018/11/20/gone-baby-gone-christopher-gillberg-on-pandas-pans/

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/

My Kid is Not Crazy – Study Shows 1/3 Kids With PANS Have Hallucinations

https://player.vimeo.com/video/212986148 <p><a href=”https://vimeo.com/212986148″>My Kid is Not Crazy: A search for hope in the face of misdiagnosis</a> from <a href=”https://vimeo.com/user31889281″>4 The Kids Films</a> on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>”>

Trailer here.

A doctor battles to save children with disabling mental illness.

Could the answer be simpler than everyone thinks?

Nine-year-old Kathryn was a normal, healthy child. She was a star student, athlete and dancer. In a matter of days, she would become totally dysfunctional. Kathryn had alarming rapid-onset OCD refusing to eat or drink. She had tremendous separation anxiety and would become panicked if her parents were not in sight. She had trouble sleeping and showed signs of age regression in vocabulary and handwriting.

How did this happen?

More than 30 years ago, a doctor discovered that an undiagnosed strep infection was the cause of one child’s disabling illness. More and more evidence was found: Strep was linked to symptoms normally chalked up to psychiatric illness. Modern medicine has been very slow to adopt this new idea.

“My Kid is Not Crazy,” a film by Tim Sorel, tracks the journey of six children and their families as they become tangled in the nightmare of a medical system that lacks the compassion and knowledge to treat these children.

MY KID IS NOT CRAZY IS THE CINEMATIC, PEDIATRIC EQUIVALENT OF BRAIN ON FIRE-MEETS-INFECTIOUS MADNESS. A FILM THAT WILL CHANGE THE WAY WE LOOK AT MENTAL ILLNESS FOREVER. -CHICAGO NOW

Rent on Vimeo for $3.99

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https://www.sciencedirect.com/science/article/pii/S0022395618307027

This 2018 study shows that over 1/3 of kids with PANS have hallucinations and are more impaired than those without psychotic symptoms.  The authors admonish clinicians to screen for abrupt-onset of a symptom cluster including OCD and/or food refusal, with neuropsychiatric symptoms (enuresis, handwriting changes, tics, hyperactivity, sleep disorder). 

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**Comment**

I post articles and videos on PANS/PANDAS, Autism, and other illnesses with an autoimmune label due to the fact that tick borne illness can be a part of this picture and a trigger which starts the downward cascade.

Please educate your loved ones about this potential as children are losing their childhoods to unbelievable misdiagnosis and suffering.

Vaccines can also be triggers:  https://madisonarealymesupportgroup.com/2017/09/21/aluminum-flawed-assumptions-fueling-autoimmune-disease-and-lyme/

https://madisonarealymesupportgroup.com/2017/12/02/scottish-doctor-gives-insight-on-lyme-msids/  He has also successfully treated a number of young women who fell ill after their HPV vaccination, which seems to have stimulated a latent Lyme infection to reactivate.

https://madisonarealymesupportgroup.com/2016/04/24/gardasil-and-bartonella/

Asymptomatic girls after receiving Gardasil activated dormant Bartonella which was confirmed by testing.

https://madisonarealymesupportgroup.com/2017/10/15/vaccines-and-retroviruses-a-whistleblower-reveals-what-the-government-is-hiding/  Data suggests that 6% of the U.S. population is harboring a retrovirus in their bodies that can develop into an acquired immune deficiency. This is not the well-known AIDS caused by HIV, but Acquired Immune Deficiency Syndrome (AIDS) associated with other retroviruses.  These non-HIV retroviruses were unintentionally introduced into humans over the past 75 years.  It began with trials of polio vaccines and yellow fever vaccines given in the early 1930s. This is when the first recorded cases of Chronic Fatigue Syndrome and autism appeared. It involved the use of laboratory mice to prepare vaccines for human use. [1]

More on PANS:  https://madisonarealymesupportgroup.com/2018/10/10/pans-pandas-awareness/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2018/08/01/the-3-pans-myths-that-are-ruining-lives/

 

 

 

 

 

 

Gone Baby Gone – Christopher Gillberg on PANDAS/PANS

https://gnc.gu.se/english/gillberg-s-blog/gone-baby-gone?

1514077_gnc

Gone baby gone

post by Christopher Gillberg 2nd October 2018

It has been 25 years since Susan Swedo described the condition now referred to as PANDAS* (which, more recently, has come to be included as a subgroup of the somewhat larger group PANS**). Swedo had herself previously examined children who after bouts of rheumatic fever (brought on by streptococcus infection) had developed Sydenham’s chorea, a condition characterised by abnormal motor movements of the face, hands and feet, and in many cases speech difficulties, slowed cognitive processing, obsessive-compulsive thoughts, concentration difficulties, hyperactivity and other psychiatric symptoms as well. Onset of Sydenham’s chorea is usually quite acute, but typically only occurs many months after a streptococcus infection has concluded.

PANDAS/PANS is similar to Sydenham’s chorea in all relevant aspects where mental symptoms are concerned, but they manifest more dramatically; motor control issues, however, are much less pronounced or completely absent. Onset is often extremely acute – from one day to the next, or at the very least from one week to the next. A child who has previously only shown minimal or moderate signs of autism, ADHD or other ESSENCE problems (problems mild enough to generally not warrant any diagnosis) are suddenly stricken with severe separation anxiety, obsessive-compulsive thoughts and actions, tics, concentration difficulties, emotional withdrawal, tantrums, crying spells or even severe psychosis-like symptoms. Quite often they also start wetting themselves and acting as though their development has regressed by several years. Some children with this dramatic symptomatology have recently gone through a streptococcus infection (in which case it might be reasonable to consider PANDAS), whereas in other cases there is no proven link to infection whatsoever (whether streptococcus or otherwise). There are some cases where, even without any clear link to streptococcus infection, penicillin treatment still appears to reduce symptoms. However, the reason for this is unknown.

The CNC/GNC is conducting a research study on PANS in children and adolescents and the first results are currently being published.

There are a number of things that I would like to strongly emphasise now that we have completed this study on PANS, the first Swedish study of its kind aimed only at children, adolescents and their families:

1. PANS exists and is not “a hoax” or “fabricated”.
2. PANS has nothing to do with Münchhausen syndrome, which is to say that this is not something that sick or weird parents have come up with.
3. The child has usually had some minor problems before the frightening deterioration occurs.
4. Immune diseases among close family members are not uncommon.
5. We know almost nothing about the causes behind it.
6. We do not know how common it is.
7. We do not know how closely related it is to regressive autism, Sydenham’s chorea or Landau-Kleffner syndrome.

All of this means that continued research on PANS should be a top priority, especially at institutions equipped with both knowledge and an interest in expanding that knowledge base, such as the CNC/GNC in Gothenburg and the OCD team/Astrid Lindgren Children’s Hospital in Stockholm.

Anyone who feels that their child has suddenly been “spirited away” without any explanation must have some avenue towards help and understanding. Most importantly, we need to figure out what is best for all the children who one day start acting in an unrecognisable manner, almost as if their old selves were “gone”. Almost nothing can be worse in this situation than to meet so-called experts who do nothing but mistrust and question one’s account of the symptoms and the circumstances surrounding their onset.

Families living with PANS know how terrible it can be to suddenly feel as though they have “lost a healthy child”. By allowing these families to meet doctors and psychologists who are knowledgeable in the field, we can at least give them a chance to feel like they “got their child back”.

*PANDAS=Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection
**PANS=Pediatric Acute-onset Neuropsychiatric Syndrome

Christopher Gillberg will be one of the speakers at the SANE Sweden 2019 PANS Conference. For more information, please visit the following link!

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More on PANDAS/PANS:  https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/

https://www.mercurynews.com/2014/04/19/misdiagnosed-bipolar-one-girls-struggle-through-psych-wards-before-stanford-doctors-make-bold-diagnosis-and-treatment/

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2018/09/26/more-awareness-needed-for-childrens-neurological-conditions/

https://madisonarealymesupportgroup.com/2018/09/05/pans-autism-the-immune-system-an-interview-with-expert-neurologist-dr-richard-frye/

https://madisonarealymesupportgroup.com/2018/10/10/pans-pandas-awareness/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2018/08/01/the-3-pans-myths-that-are-ruining-lives/

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

 

 

 

 

Neuropsych Disorders in Kids: An Interview with Co-Founder of The Stanford PANS Clinic – Dr. Kiki Chang

https://www.neuroimmune.org/dr-kiki-chang.html

Neuropsychiatric Disorders In Children: An Interview with Co-Founder of The Stanford PANS Clinic, Dr. Kiki Chang

10/22/2018

Please go to link for an informative interview with Dr. Kiki Chang, a child psychiatrist with over 22 years of experience whose specialty is working with youth and young adults at risk for serious mood disorders such as depression, bipolar, and PANS/PANDAS and related neuropsychiatric disorders.


 

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https://madisonarealymesupportgroup.com/2015/10/06/november-dr-brown-on-msids-pandas-pans/  According to Dr. Brown, 80% of his PANS patients have Lyme/MSIDS.

 

 

 

 

PANS/PANDAS Awareness

Approx 4 Min

Excerpt from the documentary “My Kid Is not Crazy.”

PANS/PANDAS Awareness Day was yesterday but I didn’t get the memo until today.  🙂

While disturbing at the beginning, look how antibiotics made all the difference.  Less than four minutes of film that shows how devastating PANS can be.

How many children are slipping through the cracks and are being labeled “mentally ill?”

A prominent Lyme literate doctor in Wisconsin states that approximately 80% of his Autistic, and PANS/PANDAS patients have Lyme/MSIDS.  

PANDAS_PANS_Infographic_V0.2

Please note the estimate that 1 in 200 children in the USA are affected by it.

You as a family member, friend, or alert medical professional have the ability to share this information when you suspect it.  Speak up.  These kids need our help.

For more:

https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/  Despite the fact that published diagnostic guidelines for PANS/PANDAS were created in 2015, but some physicians still feel it’s not legit.

Physicians need to take this disease seriously.

According to Margo Thienemann, MD, clinical professor of psychiatry and behavioral sciences at Stanford, and the lead author of the portion of the guidelines that address psychiatric and behavioral interventions, treatment is at least tri-part:  

  • if infection is present, treat the infection
  • treat close contacts who may be exposing the child to infection
  • treat inflammation, which is thought to cause the brain symptoms

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/

https://madisonarealymesupportgroup.com/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2018/09/26/more-awareness-needed-for-childrens-neurological-conditions/

https://madisonarealymesupportgroup.com/2018/09/05/pans-autism-the-immune-system-an-interview-with-expert-neurologist-dr-richard-frye/

 

 

 

 

More Awareness Needed for Children’s Neurological Conditions

https://www.dailymail.co.uk/wires/pa/article-6195293/More-awareness-needed-children-s-neurological-conditions.html

More awareness needed on children´s neurological conditions

Children who display sudden and severe personality and behavioural changes following a common illness such as strep throat could be suffering from neurological conditions rather than mental health issues, a charity has warned.

Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) occurs when an infection triggers a misdirected immune response, resulting in brain inflammation.

This can lead the child to exhibit symptoms including anxiety, aggressive behaviour, depression and the onset of obsessive-compulsive disorder.

William Hewlett, who developed PANDAS at seven-years-old after catching chicken pox (PA/PANS PANDAS UK).

 

William Hewlett, who developed PANDAS at seven-years-old after catching chicken pox (PA/PANS PANDAS UK).

The conditions were first recognised in the United States in 1998 where it is estimated as many as one in 200 children could be affected, with the figure believed to be similar in the UK.

The charity PANS PANDAS UK said a failure to understand the condition in the UK means that children are regularly wrongly referred to Child and Adolescent Mental Health Services (CAMHS).

Treatments to address the underlying infection which causes the symptoms typically include a simple course of antibiotics.

Maya Humphries, from the West Midlands, has suffered from strep infections since she was a baby, but at the age of seven, following another bout of the infection, her family noticed a change in her behaviour overnight.

Her symptoms included Tourette’s, hallucinations, suicidal thoughts and separation anxiety, along with restricted eating and a fear of being sick.

The charity said GPs did not know how treat her and tried looking at each symptom in isolation, suggesting she had anorexia because she was not eating, and anxiety because she did not want to be left alone.

Frustrated with the lack of progress after four months, Maya and her family resorted to sitting in Birmingham Children’s Hospital until they agreed to give her an appointment with a neurologist.

She was found to have both PANS and PANDAS and her symptoms were settled with a course of long-term antibiotics.

However because of the delay in diagnosis and treatment Maya, now 10, still battles with the illness.

The charity has also helped William Hewlett, from Romsey, Hampshire, who developed PANDAS at seven-years-old after catching chicken pox.

His symptoms developed suddenly and included violent outbursts, hallucinations, not recognising his parents, avoiding food and trouble sleeping.

His frustrated family finally came to understand what was wrong with him after someone on a Facebook support group suggested they look into PANDAS.

They went on to request a prescription for antibiotics, and they saw drastic improvements within 24 hours.

Two private consultants have since diagnosed William, now eight, as having PANDAS but as no one on the NHS has come to the same conclusion, they are unable to pursue long-term treatment and so his family are now relying on homeopathy to manage his symptoms.

More than 200 medical professionals and families affected by the condition are expected to attend the first annual PANS PANDAS conference, which has been organised by the charity at Imperial College London on Saturday.

They will join the charity in calling for NHS England to support families affected by the condition and discuss options for raising awareness in the UK.

It said the World Health Organisation (WHO) has now acknowledged PANDAS but awareness needs to be raised in the UK too.

Chairwoman Georgia Tuckey said:

“Parents with children who have PANS or PANDAS regularly find themselves confused, helpless and desperate for someone to support their child.

“With better education in the medical community we can support these families faster and get their children on the long road to recovery quicker.”

Dr Andrew Curran, consultant paediatric neurologist at Alder Hey Children’s Hospital in Liverpool, said:

“It is essential that doctors should be alerted to the possibility of psychiatric and neurological disorder triggered by infections.

“With this knowledge an array of treatment options become available that can be transformative of a young person’s and their family’s lives.”

Vicky Burford, whose teenage boy has PANS, said:

“It was devastating to see our lovely son suddenly change.

“None of the diagnoses we were given seemed to fit his unique and strange combination of symptoms. Our son was disappearing before our eyes.

“My family suffered for two full years before getting appropriate treatment.

“No family deserves this, and we want to make sure that no other parent or child experiences the same nightmare.”

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**Comment**

Please know that tick borne infections can also trigger this illness.  A prominent LLMD in Wisconsin states 80% of his PANS/PANDAS patients have underlying tick borne infections such as Lyme.

Notice that a simple course of antibiotics makes all the difference, but similarly to Lyme/MSIDS, if diagnosis and proper treatment is delayed, a person can struggle for years.

Since there are various triggers, some being viruses, antibiotics do not always work.

For more:

https://madisonarealymesupportgroup.com/2018/09/05/pans-autism-the-immune-system-an-interview-with-expert-neurologist-dr-richard-frye/

https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/

https://madisonarealymesupportgroup.com/2018/08/01/the-3-pans-myths-that-are-ruining-lives/

https://madisonarealymesupportgroup.com/2018/02/21/why-therapy-isnt-enough-when-you-have-ocd-and-pans-pandas/

https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/

https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/