Archive for the ‘Autism’ Category

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!

___________________

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/

Category:

Autism, PANS, Psychological Aspects, research

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.

 

_____________________
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.

 

 

 

 

Category:

Activism, Autism, PANS, Psychological Aspects, Treatment, Uncategorized

Autism Spectrum Disorder (ASD) The Question Every Parent Should Ask….Why is This Not Medical?

https://www.linkedin.com/pulse/autism-spectrum-disorder-asd-question-every-parent-ask-goldberg-md/

Autism Spectrum Disorder (ASD) The Question Every Parent should ask.… Why is This Not Medical?

Michael Goldberg, MD

There are different kinds of childhood disorders, yet none scientifically or medically can remotely affect the CDC reported 1:36 children and be thought of as genetic or developmental in origin, unless, medical science is ignored and that child is NOW labeled, ASD Autistic! However, given the horrific and increasing numbers of ASD affected children, there must be an underlying unidentified medical disease presenting with autistic like symptoms and behaviors i.e. an ASD “PHENOTYPE”!  

It is scientifically impossible to have an epidemic without a disease origin. Mistakenly labeling and then treating children as “psychiatric Autistic” is the failure of our medical system to recognize these children are really part of an enlarging, unrecognized medical pandemic affecting children and young adults. ASD (1:36) today is worse than the Polio epidemic (1:1500 – 1:2000) of the 1950’s.

As early as the 1960s, certainly in the 1970s, pediatricians were being taught at UCLA and other excellent medical schools that Psychiatric, DSM autism affected 1 – 2 in 10,000 children. Further, those 1-2 children, in order to be labeled Autistic must never be affectionate/ never normal! To have that number mysteriously begin to increase in the 1990s to the astounding level of 1 in 36 otherwise affectionate children begs the questions; “Is this epidemic? And if so “Why is this condition not considered and treated as medical?”  

Instead of being excited about the arrival of new baby, watching a child grow and prosper, sadly many mother’s today (expressed constantly when meeting new parents) live with perhaps worse fears than parents and families of the 40s and 50s. At that time the polio epidemic was a real threat, affecting 1:1500 – 1:2000 children, and the world mobilized to find a cure. Today ASD affects 1:36 and climbing! Where is the medical community? You cannot have an epidemic of psychiatric or developmental conditions!

I am proposing an answer to the question, nobody in public health, academic research or the pediatric medical community dare to acknowledge or ask: Is ASD in children and young adults a medical condition? Are they medically ill and thus treatable? 

 My answer: YES and the medically treatable symptoms and manifestations are directly related to Herpes viruses (potentially others) and the immune system! 

Medical School of the 1970s was eventful.  Professors opined we were entering a “golden age” of medicine, because “common” pathogens were being identified and eradicated. As new physicians we recognized we live in a sea of viruses. We were protected by our immune system and its adaption over thousands of years.

Nobel level professors taught there were differences between “normal” viral titers (markers) and “elevated” viral titers, indicating the presence of an active virus. Then in the early – mid 1980s very powerful medical leaders (CDC, NIH) unexplainably decided elevated Herpes viral titers in children and adults were meaningless! Lab evaluations of “normal” vs. elevated, are still carried over today, but “ignored” when elevated. As a practicing pediatrician, to suddenly be required to ignore the role of the Herpes virus was and still is beyond comprehension.  

The Medical Literature still support the significance of a fourfold change in viral titers. However, if a pediatrician does not consider or is precluded from testing for viral titers, how can the physician begin to evaluate or “rule out” if there is treatable viral activity? She/he cannot! How does that benefit the child or the family? It does not! For a physician to leave a child with overwhelming sensory issues, without a complete medical work up is unconscionable. In my opinion, to discount and ignore elevated viral titers in children and young adults remains one of the biggest travesties being perpetrated upon our children by the current medical system.

All of the ASD labeled children I am working up are affectionate. Many present with this ASD “phenotype”. Typically, their blood tests show elevated viral titers for the HHV6 herpes virus, Epstein Barr and/or CMV virus. In addition, many of these children also present with outright early developmental delays and motor issues. For these issues, I was taught by excellent professors to think of viruses, “rule-out viruses.”  

Most children having issues today become labeled as “on the ASD spectrum” without a proper medical workup and investigation for illness, chronic viral activation issues, etc. By artificially removing the medical criteria developed over decades past, the current “system” too quickly, attaches the label of ASD. The pediatrician unwittingly abandons the children and parents to the psychiatric community for behavior training and a life of isolation and despair. Parents are told to cope and forego their focus or desire to pursue real medical answers and real potential help for their children. How much worse can this get before parents and others step up and declare “enough is enough”!

In my professional opinion based upon over 40+ years of clinical experience, “Autism spectrum disorder” (not meeting strict Kanner criteria) with accompanying language impairment is in reality a medical disease (complex immune – complex viral) presenting as an encephalopathy (often viral) with “autistic” symptoms.

The language impairment in these ASD labeled children is part of the disease, not secondary to Autism Spectrum Disorder. Many of my patients (approx. 75+%) respond favorably to a medical protocol of anti-viral medications and diet modifications, eliminating known allergenic foods. This anti-viral component mitigates the effects of the viruses to the brain, while the diet changes reduce stress on the body, the brain, and the immune system. Additional improvement is achieved with the use of an SSRI (Selective Serotonin Reuptake Inhibitor). The SSRI is introduced not for “depression,” but as a pharmaceutical/medical way to treat temporal lobe hypo perfusion; a real, medically definable, physiologic CNS dysfunction evidenced on a NeuroSPECT scan

This medical protocol results in the elimination or severe abatement of the “autistic” like symptoms and behaviors and allows an increase in, a return of, higher cognitive function. The most common phrase I hear from parents of improving children is,

“It is as if a fog has lifted.”

and from speech and other therapists,

“This is not the same child I have been working with.”

These otherwise affectionate “typical/normal” (now much brighter cognitively) children are now placed in a position to be taught (not trained), allowed to “catch up” and progress with their peers. For whatever reasons, those in positions of authority refuse to acknowledge or investigate this treatable complex immune, complex viral medical problem. Instead, current focus and research is on “causation” with activated “gene expressions” or “complex genetic” ideas being proffered as the origin. The reality is a treatable underlying viral/immune process is being ignored! The “system” has become so biased, against the obvious, that good professors wishing to pursue research into a readily treatable complex immune, complex viral causation, have not only been refused funding, but fear losing their positions. These short-sighted money decisions at the clinical level mean the loss of the near immediate relief from ASD behaviors and mannerisms, improved, often excellent cognitive abilities, and improvement in the future quality of life for the child and family. Why?

Recently I met with a group of educators discussing the “differences” working with a medically treated ASD child (stressing an ASD “phenotype,” not developmental “autism”). They were aware the medically treated child was able to understand and be taught! These educators realized this was an emerging potentially regular child, not a child mysteriously born “miss-wired.” Thankfully, there are excellent academic professors who also know something is seriously wrong, literally acknowledging we are in a missed medical “pandemic”.

An appropriately focused and engaged medical community together with key medical and academic researchers, could create a pathway for a healthier future for the children and reduce the financial costs to all affected, including our social and educational systems.

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**Comment**

https://madisonarealymesupportgroup.com/2017/10/26/clinical-trial-shows-most-kids-with-autism-are-not-born-with-it/

The Duke study is remarkable in that 60-70% or more of children with Autism have de novo gene mutations (not found in either parent) that must have occurred after birth according to the results, not in the egg, sperm or early utero development as previously, and erroneously assumed.  This new finding reveals research should now be geared to finding out what environmental damage after birth leads to these mutations and/or what pathogens are acting as triggers.  Autism like Lyme/MSIDS is a pandemic and according to one Wisconsin LLMD, 80% of his Autistic patients are also infected with Lyme/MSIDS.

More and more is coming out about the pathogenic aspect of disease (even mental illness).  This is certainly true for Alzheimer’s & Dementia, as well as other autoimmune issues such as in this story:  https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/  While Susannah Cahalan’s issue was truly autoimmune, we learn of Patrik, who had Lyme:

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. Dr. Souhel Najjar, Cahalan’s doctor, heroically saves the day again.

This is another great read regarding the pathogen element within Alzheimer’s:  https://madisonarealymesupportgroup.com/2018/09/11/its-time-to-find-the-alzheimers-germ/

Then there’s this gem:  https://madisonarealymesupportgroup.com/2016/06/03/borrelia-hiding-in-worms-causing-chronic-brain-diseases/  (Excerpt below)

MacDonald states that both worms and borrelia can cause devastating brain damage and that,

 

“while patients are wrongly declared free of Lyme and other tick-borne infections, in reality, too often they contract serious neurodegenerative diseases which can kill them.”

MacDonald made his discovery from 10 specimens from the Rocky Mountain Multiple Sclerosis Center Tissue Bank. All 10 showed evidence of borrelia infected nematodes. Five patients who died of Glioblastoma multiforme, a malignant brain tumor, and four patients who died of Lewy Body dementia also showed infected nematodes.  MacDonald used FISH, Fluorescent In Situ Hybridization, which uses molecular beacon DNA probes to identify pieces of borrelia’s genetic material which fluoresce under the microscope with a 100% DNA match.

In other words, this is no mistake.

 

 

 

 

Category:

Autism, Lyme, Psychological Aspects, Viruses

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/

 

 

 

 

Category:

Activism, Autism, Lyme, PANS, Psychological Aspects, Treatment, Viruses

Toxic Metal Pollution Linked With Development of Autism Spectrum Disorder

https://m.medicalxpress.com/news/2018-09-toxic-metal-pollution-linked-autism.html

Toxic metal pollution linked with development of autism spectrum disorder

September 14, 2018 , RUDN University
Environmental metal and metalloid pollution (lead, mercury, aluminum, and arsenic) may induce autism spectrum disorders (ASDs) Credit: Vyacheslav Sheludkov

Russian researchers, together with their foreign colleagues, have demonstrated that environmental metal and metalloid pollution (lead, mercury, aluminum, and arsenic) may induce autism spectrum disorders (ASDs), and have considered possible mechanisms of exposure to these substances. The study may be useful for the prevention and therapy of ASD. The article is published in the journal Environmental Research.

Autism spectrum disorder is a group of disruptive neurodevelopmental disorders that cause problems in communication, socialization, and limited interests. They appear usually at the age of three years. Over the past 20 years, the prevalence of ASD has increased by 30 percent globally, although scientists have not yet reached a consensus on the causes and mechanisms of the disorder. Genetic mutations correspond to approximately 7 percent of cases of ASD. Such mutations can occur under the influence of in the first months of prenatal and postnatal life, when the nervous system is especially sensitive to toxic environmental pollutants. This hypothesis is confirmed by recent studies. For example, scientists from RUDN University with their colleagues from Saudi Arabia and Norway have observed increased lead and mercury levels in association with selenium deficiency in erythrocytes of children with ASD. A large Korean study including 458 mother-child pairs showed a clear link between exposure to mercury in early childhood and autistic behavior at the age of five.

But how, exactly, can toxic metals cause ASD? Researchers of the RUDN University and Yaroslavl State University, under the guidance of Prof. Anatoly Skalny, believe that the main mechanism underlying the onset of ASD is in brain . The latter is related to increased levels of pro-inflammatory cytokines—signaling peptide molecules. In addition, arsenic disrupts the metabolism of neurotransmitters and promotes epigenetic changes. Finally, aluminum can cause dysfunction of glia – non-neuronal auxiliary cells of the nervous tissue, which play an important role in the functioning of the nervous system. These assumptions are confirmed by the results of the authors’ studies, which demonstrated a tight association of the level of toxic elements in the blood serum of children with ADS and neuroinflammatory markers.

Researchers from the RUDN University considered the link between exposure to three toxic metals (lead, mercury, aluminum) and arsenic with the emergence of ASD in children. They proposed three main processes that occur under the influence of toxic metals and contribute to the development of autism: neuroiflammation, apoptosis (programmed cell death), and excitotoxicity. In addition, the scientists proposed preventive measures and approaches that reduce the risk of ASD.

“Unfortunately, the contemporary methods of metal detoxification do not allow to achieve ASD remission, especially since their effectiveness in ASD is not confirmed from the positions of evidence-based medicine,” noted the co-author of the article Alexey A. Tinkov, M.D., Ph.D., senior lecturer of the Department of Medical Elementology of the RUDN University.

In the case of acute intoxication, the use chelating agents (DMPS, DMSA, CaEDTA and BAL) is recommended, but in the case of ASD, chronic metal overload usually takes place. Moreover, chelators also have a significant number of side effects. In the case of chronic intoxication, toxic metals can be successfully eliminated from the body by functional foods. A number of phytochemicals (polyphenols, etc.) decrease lead toxicity. In turn, laboratory data demonstrate that zinc and selenium compounds significantly reduce toxicity of lead, arsenic and cadmium.

Researchers recommend the use of a comprehensive approach for the correction of metal overload in ADSs. Particularly, in addition to elimination of metals exposure, it is proposed to use antioxidants and anti-inflammatory compounds, as well as supplements containing heavy metal antagonists (selenium, zinc), and adhere to a diet.

More information: Geir Bjørklund et al. Toxic metal(loid)-based pollutants and their possible role in autism spectrum disorder, Environmental Research (2018). DOI: 10.1016/j.envres.2018.05.020

Provided by: RUDN University

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**Comment**

A prominent Wisconsin Lyme doctor states 80% of his Autistic patients also have a Lyme/MSIDS infection.

For more on the metal issue:

https://madisonarealymesupportgroup.com/2017/09/19/autism-aluminum-adjuvant-link-corroborated/

https://madisonarealymesupportgroup.com/2018/06/15/canadian-data-more-autism-where-vaccine-coverage-is-highest/

https://madisonarealymesupportgroup.com/2018/06/01/immunoexcitotoxicity-as-the-central-mechanism-of-etiopathology-treatment-of-autism-spectrum-disorders-a-possible-role-of-fluoride-aluminum/

https://madisonarealymesupportgroup.com/2017/11/28/biological-mechanisms-of-vaccine-injury/

“In depositions in a trial in Tennessee, scientists from the Kennedy Krieger Institute at Johns Hopkins University make it clear that children really should be screened before their first vaccination. If screening for individual susceptibility were done, many vulnerable children would be spared from being harmed by vaccines.”  https://articles.mercola.com/sites/articles/archive/2018/09/16/how-to-end-the-autism-epidemic.aspx?

For those who believe the CDC’s rhetoric that “vaccines do not cause Autism,” please see slide #5 of James Lyons Weiler’s work showing at least 12 studies showing an association:  vials-health-summit-slides-james-lyonsweiler-magic

The Russian study stated that genetic mutations are responsible for 7% of children with Autism. The study in this link https://madisonarealymesupportgroup.com/2017/10/26/clinical-trial-shows-most-kids-with-autism-are-not-born-with-it/ showed a similar finding that most children with Autism are NOT born with it:  Autologous Cord Blood Infusions Are Safe and Feasible in Young Children with Autism Spectrum Disorder: Results of a Single-Center Phase I Open-Label Trial  

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

 

 

 

 

 

 

Category:

Autism, Inflammation, research, Supplements, Treatment