Archive for the ‘PANS’ Category

Why Your Kid’s Strep Throat Keeps Coming Back

http://sciencemission.com/site/index.php?page=news&type=view&id=health-science%2Fwhy-your-kid-s-strep

Why your kid’s strep throat keeps coming back

Why your kid's strep throat keeps coming backEach year, some 600 million people around the world come down with strep throat. But for some children (and their parents) it’s more than an occasional misery. It’s a recurring nightmare. Yet, it was unclear why some kids are prone to repeated bouts of strep throat while others appear to be more or less immune. The latest study by researchers provides the first clues why some children are more susceptible than others to contracting recurrent group A strep tonsillitis, better known as strep throat.

Their findings, published in the issue of Science Translational Medicine, suggest that recurrent tonsillitis is a multifactorial disease where immunological factors combined with an underlying genetic susceptibility allow group A strep to invade the throats of certain individuals time and again. Gaining a better understanding of why some children fail to develop protective immunity also opens the door to developing a vaccine to protect against strep throat, the researchers predict.

“Repeated strep throat is the second most common indication for the removal of tonsils in children. Like every surgery it carries certain risks but there is recent data suggesting that tonsillectomy may increase the risk of upper respiratory tract diseases in the long term,” says senior co-author Matthew. “My hope is that as we learn more about the causes behind recurrent strep infections we’ll be able to intervene before they happen.”

Strep throat is one of a diverse array of conditions caused by the bacterium Streptococcus pyogenes, better known as group A Streptococcus (GAS). It can cause pneumonia, scarlet fever, impetigo, which results in highly infectious skin sores, and necrotizing fasciitis, the feared flesh-eating disease. Unlike necrotizing fasciitis, strep throat is easily treated with antibiotics. But if left undiagnosed, it, too, can lead to serious complications.

Trying to understand the longstanding mystery why some children are predisposed to frequent bouts of GAS tonsillitis and what their immune response looks like, the researchers turned to the tonsils themselves. Tonsils are lymph-node like structures located on each side of the back of the throat. Small pockets, or crypts, on their surface collect and sample microbes and can become the breeding ground for GAS.

The authors collected tonsil tissues from a cohort of children aged 5 – 18 who had their tonsils removed either because they suffered from repeated bouts of strep throat or underwent tonsillectomies for unrelated reasons such as sleep apnea. They were particularly interested in germinal centers, the central hubs where B cells have to team up with so-called follicular helper T cells (Tfh cells) to start producing antibodies.

In addition to a significant decrease in the frequency of both B and follicular helper T cells, tonsils from children with recurrent tonsillitis had consistently smaller germinal centers areas overall. “These kids have a poor germinal center response,” says the author. “Interestingly it is associated with a particularly poor antibody response to SpeA, which is an important aspect of protective immunity.”

Short for streptococcal pyrogenic exotoxin, SpeA is not an essential component of the GAS genome. However, a particularly potent version of the toxin arose in the bacteria in the 1980s and these strains quickly swept the globe to become the most prevalent cause of strep throat. Children in the control group had high anti-SpeA antibody titers, which indicated that they had been exposed to the bacteria but did not get sick.

Among children with recurrent GAS tonsillitis the disease was likely to run in the family, suggesting a genetic component. Genetic testing revealed two specific genetic variants in the HLA region, which determines how pathogens interact with the immune system, that were associated with increased susceptibility to recurrent tonsillitis and one that protected against the disease.

“Since the immunological connection as well as the genetic connection are all tied to an insufficient antibody response against SpeA it suggests that recognizing this factor is actually a key problem for these kids,” says the author. “Having a vaccine that trains the immune system in advance might be able stimulate a protective immune response that can prevent recurring bouts of tonsillitis.”

http://stm.sciencemag.org/content/11/478/eaau3776

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**Comment**

This is important as strep can lead to PANDAS:  https://madisonarealymesupportgroup.com/2018/01/05/scary-side-of-childhood-strep/

A highly respected LLMD here in Wisconsin has found that 80% of his PANDAS/PANS kids also have Lyme/MSIDS (borrelia and other coinfections).  There’s much that is still unknown about this life-changing illness but tick borne illness (TBI’s) can definitely cause or exacerbate PANDAS/PANS.

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

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

https://madisonarealymesupportgroup.com/2019/01/27/pans-pandas-autoimmune-encephalitis-rickert-hong/

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

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

 

 

 

Brain Under Attack – PANS, PANDAS, & Related Developmental Disorders

http://www.betterhealthguy.com/episode88

Episode #88: Brain Under Attack with Maria Rickert Hong, CHHC, AADP

In this episode, you will learn about PANS, PANDAS, and related developmental disorders.

About My Guest

My guest for this episode is Maria Rickert Hong. Maria Rickert Hong, CHHC, AADP is a former Wall Street sell-side equity research analyst who is now a Certified Holistic Health Counselor. She is the author of the bestselling book, “Almost Autism: Recovering Children from Sensory Processing Disorder, A Reference for Parents and Practitioners” and the co-author of “Brain Under Attack: A Resource for Parents and Caregivers of Children with PANS, PANDAS, and Autoimmune Encephalitis”. As a health coach, she helps parents make diet and lifestyle changes to recover their children from symptoms of Sensory Processing Disorder, autism, PDD-NOS and ADHD. She has recovered her two boys from SPD, asthma, and acid reflux. Maria is a board member, Media Director, and blogger for Epidemic Answers, a 501(c)3 non-profit that lets parents know that recovery is possible and is the sponsoring non-profit of “The Documenting Hope Project”. Maria is also a board member of Parents as Partners.

Key Takeaways

  • What is the difference between PANDAS and PANS?
  • When does PANS generally present?
  • What are the symptoms of PANS?
  • What is the role of inflammation in PANS?
  • Do PANS and autism overlap?
  • What leads to a blood-brain barrier breach in PANS?
  • What is the role of EMFs in PANS?
  • What role do glutamate, phenolics, and salicylates play in PANS?
  • What are some of the triggers for PANS?
  • Does mold exposure play a role in PANS?
  • What tests are done to explore the potential for PANS?
  • What is the Epidemic Answers Four Step Healing plan?
  • Why is detoxification and drainage key in PANS recovery?

Connect With My Guest

http://mariarickerthong.com

Related Resources

Epidemic Answers

Brain Under Attack

My Kid Is Not Crazy

Disclaimer:  The content of this show is for informational purposes only and is not intended to diagnose, treat, or cure any illness or medical condition. Nothing in today’s discussion is meant to serve as medical advice or as information to facilitate self-treatment. As always, please discuss any potential health-related decisions with your own personal medical authority.

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For more:  https://madisonarealymesupportgroup.com/?s=PANS

https://madisonarealymesupportgroup.com/?s=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/

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

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

Mother’s Appeal After Boy Diagnosed With Autism When He Just Needed Antibiotics

https://www.bbc.com/news/uk-scotland-edinburgh-east-fife-46989099

Mother’s appeal after boy diagnosed with autism when he just needed antibiotics

25 January 2019

‘Overnight, something went very wrong’

https://www.bbc.com/news/uk-scotland-edinburgh-east-fife-46989099  (News Video in Link)

A mother is calling for greater awareness of a little-known condition she believes changed her easy-going son overnight.

Alison Maclaine fears some children are being misdiagnosed with autism and mental health issues when they are really suffering an infection which can be treated simply with antibiotics.

Her eight-year-old son Jack suffered distressing personality changes and “lost a year of his life”.

And she said she was left “in despair” that she and her family had “no quality of life”.

Now Alison believes he was suffering from Paediatric Acute-onset Neuropsychiatric Syndrome (PANDAS), triggered by a streptococcal infection – a condition that can be treated with simple antibiotics and anti-inflammatories.

Something wrong

Jack went to bed one Friday in January last year, looking forward to a football tournament he was playing in the next day.

But on arrival at the venue on Saturday morning he became overwhelmed with anxiety. After several attempts, he was unable to enter the building.

At home in Dumfries, Alison realised something was very wrong.

She told the BBC: “He started to repeatedly apologise. He said he didn’t deserve to have fun, didn’t deserve to have friends, didn’t deserve to have nice things, didn’t deserve to play football.

Alison Maclaine
Alison Maclaine knew her son’s diagnosis was not right and did her own research into his symptoms

“That eventually led to ‘I don’t deserve to live, when I get home I am just going to sit outside until I freeze to death’.”

When it came to bedtime, Jack refused to have covers and pillows and started to repeat that he needed to die, until he fell asleep.

The following day saw his behaviour sink further.

Alison said: “One of the worst things in the world must be listening to your child telling you he wanted to die and asking you to help him.”


What is PANS/PANDAS?

According to the charity PANS PANDAS UK, PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) is a neuropsychiatric condition which is triggered by a misdirected immune response which results in an inflammation of a child’s brain.

PANDAS is a subset of PANS, triggered by a misdirected immune response to a streptococcal infection which results in an inflammation of a child’s brain.

Happening very quickly, this can cause a child to exhibit symptoms including anxiety, aggressive behaviour, depression, clumsiness, insomnia and the onset of obsessive-compulsive disorder.

It was first recognised in the United States in 1998 where PANS PANDAS charities estimate as many as one in 200 children could be affected.

In 2018, the World Health Organisation recognised the condition, but in the UK it is not widely known.

There is no clear test for the condition so doctors often have to rule out psychiatric conditions. The immediate response to antibiotic or anti-inflammatory treatment is often what confirms the condition.

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).


‘Absolute despair’

Jack then became aggressive and withdrew from his beloved younger sister Cara. He would become irritable and angry and started to regress, playing with baby toys.

Over the next several months he was repeatedly diagnosed as having autism and severe anxiety.

But Alison, herself a psychiatrist, disagreed.

She said: “It got to the point where I really felt absolute despair.

“I felt that he had no quality of life, we had no quality of life. There were times when I contemplated things.”

Jack Maclaine
His family feels that Jack is “back”

That despair led to Alison doing her own research and the discovery of PANS and PANDAS.

Alison said reading the symptoms was like reading a description of her son and his behavioural changes.

Jack was finally diagnosed privately by a consultant paediatrician in England and treated with simple antibiotics.

They worked overnight and Alison had her son back.

She said: “Jack responded dramatically to the treatment. He hadn’t left the street in five months except for school. After two days on antibiotics he wanted to come to Morrisons with me and Cara. It felt like Jack was back.”

Dr Tim Ubhi

Dr. Tim Ubhi finally diagnosed PANDAS in Jack

 

Alison is frustrated now, believing if Jack had been given got antibiotics when he first presented to the GP in January, the outcome would have been different.

She said: “It is so frustrating knowing the treatment was so simple. Now I hate to think there are other children in the situation that they have this disorder that has not been picked up on and have been sent down a mental health/psychological route which can’t fix the problem.”

Dr Tim Ubhi, who diagnosed Jack’s condition, said: “The problem here is if we do not recognise this condition and we ignore it, potentially there are children out there who are suffering who could actually get treated and actually improve their symptoms.

“So we have a responsibility as physicians to think about this as a condition and do the work to actually create an awareness of what the condition is doing in the UK.”

A Scottish government spokeswoman said: “We appreciate that watching any loved one suffer is heartbreaking, even more so when it is a child.

“We are working together with partners to improve the outcomes and support for adults and children with rare conditions, and ensure that everyone receives the appropriate treatment.

“Ministers are unable to make or influence clinical decisions or definitions, and it would not be appropriate for them to do so.”

If you, or someone you know, have been affected by mental health issues, these organisations may be able to help.

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**Comment**

These stories are repeated over and over worldwide.  Time for doctors to get on board and learn about it so they can recognize and treat this.

Please take note of the plethora of symptoms and the tandem workings of PANDAS/PANS with Lyme/MSIDS. A highly respected LLMD here in Wisconsin has found that 80% of his PANS kids also have Lyme/MSIDS (borrelia and other coinfections).  

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

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

https://madisonarealymesupportgroup.com/2019/01/27/pans-pandas-autoimmune-encephalitis-rickert-hong/

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

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

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.

 

 

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/