Archive for the ‘Autism’ Category

IPAK Model of Autism Spectrum Causality

http://ipaknowledge.org/ASD-Causality-Model.php

“Personal Communication, Dr. J. Lyons-Weiler, The Institute for Pure and Applied Knowledge”

 

The Vaccine Debate – Top Government Expert States Vaccines CAN Cause Autism in Some Children

http://fullmeasure.news/news/full-episodes/full-measure-january-6-2019    Video in Link.  Approx. 23 Min.

Full Measure With Sharyl Attkisson

Sunday, Jan. 6, 2019

By Full Measure Staff

Transcript of Video:

Today we investigate one of the biggest medical controversies of our time: vaccines. There’s little dispute about this much– vaccines save many lives, and rarely, they injure or kill. A special federal vaccine court has paid out billions for injuries from brain damage to death. But not for the form of brain injury we call autism. Now—we have remarkable new information: a respected pro-vaccine medical expert used by the federal government to debunk the vaccine-autism link, says vaccines can cause autism after all. He claims he told that to government officials long ago, but they kept it secret.

Yates Hazlehurst was born February 11, 2000. Everything was normal, according to his medical records, until he suffered a severe reaction to vaccinations.

Rolf Hazlehurst: And at first, I didn’t believe it. I did not think that, I did not believe that vaccines could cause autism. I didn’t believe it.

But there’s a hard reality for Yates. The trademark brain disease, pain and inability to communicate that’s common with severe autism.

In 2007, Yates’ father sued over his son’s injuries in the little known Federal Vaccine court. It was one of more than 5000 vaccine autism claims.

Congress created vaccine court in 1988, in consultation with the pharmaceutical industry. In the special court, vaccine makers don’t defend their products—the federal government does it for them, using lawyers from the Justice Department. Money for victims comes from us, not the pharmaceutical industry, through patient fees added onto every vaccine given.

Denise Vowell: Our hearings are all closed to the public. And that’s statutory.

In 2007, Yates’ case and nearly all the other vaccine autism claims lost. The decision was based largely on the expert opinion of this man, Dr. Andrew Zimmerman, a world-renowned pediatric neurologist shown here at a lecture.

Dr. Zimmerman was the government’s top expert witness and had testified that vaccines didn’t cause autism. The debate was declared over.

But now Dr. Zimmerman has provided remarkable new information. He claims that during the vaccine hearings all those years ago, he privately told government lawyers that vaccines can, and did cause autism in some children. That turnabout from the government’s own chief medical expert stood to change everything about the vaccine-autism debate.

If the public were to find out.

Hazlehurst: And he has come forward and explained how he told the United States government vaccines can cause autism in a certain subset of children and United States government, the Department of Justice suppressed his true opinions.

Hazlehurst discovered that later when Dr. Zimmerman evaluated Yates as a teenager. That’s when he partnered with vaccine safety advocate Robert F. Kennedy, Junior—who has a voice condition.

Kennedy: This was one of the most consequential frauds, arguably in human history.

Kennedy was instrumental in convincing Dr. Zimmerman to document his remarkable claim of the government covering up his true expert opinion on vaccines and autism.

Dr. Zimmerman declined our interview request and referred us to his sworn affidavit. It says: On June 15, 2007, he took aside the Department of Justice—or DOJ lawyers he worked for defending vaccines in vaccine court. He told them that he’d discovered

exceptions in which vaccinations could cause autism.” “I explained that in a subset of children, vaccine induced fever and immune stimulation did cause regressive brain disease with features of autism spectrum disorder.

Kennedy: This panicked the two DOJ attorneys and they immediately fired Zimmerman. That was on a Friday and over the weekend they called Zimmerman and said his services would no longer be needed. They wanted to silence him.

Days after the Department of Justice lawyers fired Dr. Zimmerman as their expert witness, he alleges, they went on to misrepresent his opinion to continue to debunk autism claims. Records show that on June 18, 2007, a DOJ attorney Dr. Zimmerman spoke to told vaccine court,

“We know [Dr. Zimmerman’s] views on the issue…There is no scientific basis for a connection” between vaccines and autism.

Dr. Zimmerman now calls that “highly misleading.”

The former DOJ lawyer didn’t return our calls and emails. Kennedy has filed a fraud complaint with the Justice Department Inspector General, who told us they don’t “comment on investigations or potential investigations.”

Meantime, CDC—which promotes vaccines and monitors vaccine safety– never disclosed that the government’s own one-time medical expert concluded vaccines can cause autism – and to this day public health officials deny that’s the case.

Dr. Anne Schuchat: “Based on dozens of studies and everything I know as a physician and a scientist, there’s no link between autism and vaccines.”

CDC declined our interview request. In addition to filing a fraud complaint, Kennedy has delivered Dr. Zimmerman’s affidavit to leaders on Capitol Hill. But there he claims, is another key part of this story: roadblocks set up by the pharmaceutical industry—or PhRMA.

Kennedy: But everybody takes money from PhRMA so they’ve all been corrupted. And it’s almost impossible to get anything done on Capitol Hill.

Kennedy, a Democrat, isn’t the only one claiming vaccine industry money rules the day. We spoke to 11 current and former members of Congress and staff who claim they faced pressure, bullying or threats when they raised vaccine safety questions. Several of them agreed to appear on camera.

Burton: There’s no question in my mind whatsoever that the pharmaceutical industry had a great influence with people over at the CDC and FDA. There’s no question in my mind.

Republican Dan Burton—former Chairman of the House Oversight Committee—has an autistic grandson.

Burton: I am not against vaccinations.

He pursued vaccine investigations in the early 2000s. Beth Clay was one of his staffers.

Clay: There was a lot of pressure from people on the Hill.

When you say people on the hill were exerting pressure, what kind of people? Colleagues?

Clay: Colleagues, there were pharmaceutical lobbyists. The pharmaceutical lobbyists had, you know, they are the same people that have been entrenched. They can walk into any office in Capitol Hill, and they’ll talk to staff, they’ll talk to members and they’ll encourage them to discourage, our investigation.

Sharyl: At the risk of stating the obvious why did they have that kind of access to members?

Clay: It’s money. And if you look at the donations over the last 20 years, the pharmaceutical industry, and Republican and Democrat, they’re nonpartisan. They put money everywhere.

Former Congressman, Dr. Dave Weldon, a Republican, says he got the message loud and clear.

Sharyl: If you would want to hold a hearing on an issue like vaccines and autism, your own leadership might fight you on that because of the financial influence, the pharmaceutical industry

Dave Weldon: They wouldn’t fight you. They’d kill it. It’s dead. They don’t even want to discuss it. It’s dead on arrival. If you, if you as an individual member want to take on the pharmaceutical industries. It’s forget it.

Sharyl: Can you describe an incident or just how it, how that would go?

Weldon: It would typically be in a hallway or the street and people would come up to you and say, “You know, you really need to, you know, back off on this. It could be, it could be bad for the community or bad for the country or bad for you.

Weldon says he’s generally pro-vaccine, depending on the patient and the shot—and gives flu shots to adults. We asked him to review Dr. Zimmerman’s new affidavit.

Weldon: I found his affidavit and testimony through that affidavit to be consistent with my opinions. That some children can get an autism spectrum disorder from a vaccine.

Republican Bill Posey is a current member of Congress.

Rep. Bill Posey: I don’t have to tell you that industry is a very, very powerful industry. Matter of fact, I don’t know of anyone more powerful than that industry.

Posey says his own party leaders twice promised to hold hearings on the topic, only to scuttle them in the end.

Hazlehurst – who happens to be a criminal prosecutor– was scheduled to be a witness at one such Congressional hearing. Two weeks before the hearing in 2013, he briefed Congressional staff.

Hazlehurst: I presented at that Congressional briefing and I explained in that hearing, if I did to a criminal in a court of law what the United States Department of Justice did to vaccine injured children, I would be disbarred and I would be facing criminal charges. I think that scared the hell out of them.

The hearing was abruptly cancelled. Meantime, Dr. Zimmerman – the one-time expert used to debunk vaccine autism claims—now says several of his own patients got autism from vaccines. They include Yates Hazlehurst.

Today, with intensive treatment, Yates is doing better. His dad hopes the new testimony from a most unlikely source will get new attention.

Hazlehurst: A child that was unnecessarily sacrificed and hopefully some good, will come from his suffering.

The lobby group representing the pharmaceutical industry wouldn’t agree to an interview but told us they’re working with Congress and other stakeholders on the importance and safety of vaccines to support the health and safety of individuals and communities.

_________________

**Comment**

The plot against vaccines just keeps thickening.

Here you can see the ACIP vote “yes” for a new vaccine despite the lack of safety studies on the cumulative effects: https://madisonarealymesupportgroup.com/2018/09/08/acip-vote-yes-for-new-vaccine-despite-no-safety-studies-on-cumulative-effect-with-other-vaccines/  It’s all right here in bright purple crayon.

This is how brand new vaccines are approved to the pediatric immunization schedule. Basic dialogue before they voted:
Q: Is it dangerous to use this vaccine with other vaccines?
A: We have no data on that. Once approved, it will be given along with other vaccines but we have no clue whether that’s safe or not.

Somehow approving a new vaccine with no data on the accumulated cocktail effect is OK to them IF you put them in different limbs……scientifically, this is quite a head scratcher.

By nature, vaccines are systemic.

Q: Do we at least have any data from other countries that used this vaccine in combination with other vaccines?
A: Not to my knowledge.

Sounds good to me. Lets vote yes!

Only after they vote, one guy voices concern over 16 heart attack deaths in the safety trials.

Illogic at it’s best.

Perhaps it has something to do with money & power? https://thevaccinereaction.org/2018/09/global-vaccine-market-expected-to-reach-50-52-billion-by-2023/   The value of the vaccine market will reach $50.42 billion by 2023 from $36.45 billion in 2018, at a Compound Annual Growth Rate (CAGR) of 6.7 percent, according to recently published report by private research firm MarketsandMarkets of India.1

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

https://madisonarealymesupportgroup.com/2017/12/06/mechanisms-of-vaccine-injury-part-2/

https://madisonarealymesupportgroup.com/2017/03/30/ty-bollinger-the-truth-about-vaccines-series/

https://madisonarealymesupportgroup.com/2018/08/24/financial-kickbacks-for-vaccinations-abusive-illegal-fraudulent/ “This brings us to the financial incentives to pediatricians offered by insurance companies for vaccinating our children. The Blue Cross Blue Shield health insurance document explaining these financial incentives can be found here: https://jeffreydachmd.com/wp-content/uploads/2018/08/Pediatricians-Receive-Financial-Incentives-Kickbacks-to-Vaccinate-Children-BCBS-2016-Booklet.pdf Pediatricians are raking in 40-80 thousand dollars a year from these kickback schemes.

https://madisonarealymesupportgroup.com/2018/10/05/drug-companies-pay-fda-nih-to-fast-track-market-vaccines/

https://madisonarealymesupportgroup.com/2018/10/19/fda-official-uses-revolving-door-to-join-biotech-company-developing-mrna-vaccines/

 

 

 

 

 

MCAS & Lyme/MSIDS – 2018 ILADS Convention

http://www.betterhealthguy.com/ilads-2018

Please go to link above to read The Better Health Guy’s summary on MCAS presentations at the Chicago ILADS convention.  Scott has requested people go to the link as there may be future corrections to the information.

He summarizes Dr. Afrin and Dr. Mozayeni’s presentions.

Afrin:  “Mast Cell Activation Disease: Foundation and Application in Tick Borne Disease Management”

Mozayeni:  “Mast Cells: Considerations in the Lyme or Bartonella Patient”

For those of you suffering from MCAS, I highly recommend Dr. Afrin’s book, “Never Bet Against Occam:  Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity”

For more on MCAS:  https://madisonarealymesupportgroup.com/2017/04/17/mast-cell-activation-syndrome-lymemsids/

https://madisonarealymesupportgroup.com/2018/03/13/mcas-lyme-msids/

https://madisonarealymesupportgroup.com/2018/03/26/the-agony-of-mcas/

https://madisonarealymesupportgroup.com/2018/07/27/mcas-vaccination-lyme-msids/  Dr. Afrin recently related the story of a patient,

“who in the first year of his life had been perfectly normal and then, within hours of his first DTP vaccine at age one, developed into just a terrible multi-system inflammatory mess, including essentially acute onset autism.”

When he was 20 years old, biopsies tested positive for mast cells. He was subsequently treated for MCAS with remarkable improvement.73

Most babies in the U.S. are being given 25 doses of nine different vaccines (or more) by their first birthday and can receive eight or more vaccines simultaneously.74 As mentioned previously, there are ingredients in vaccines that provoke inflammatory responses in the body that involve mast cell activation.75

 

Danish Study Shows Association Between Treated Infections and Risk of Mental Disorders in Children

https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2716981?fbclid=IwAR3ZcNmTpej7kth-mNu_5thXm2eijIfIa52keJL68Q4gjgS64bf5LxC7Co4

December 5, 2018

A Nationwide Study in Denmark of the Association Between Treated Infections and the Subsequent Risk of Treated Mental Disorders in Children and Adolescents

JAMA Psychiatry. Published online December 5, 2018. doi:10.1001/jamapsychiatry.2018.3428

Abstract

Importance  Infections have been associated with increased risks for mental disorders, such as schizophrenia and depression. However, the association between all infections requiring treatment and the wide range of mental disorders is unknown to date.

Objective  To investigate the association between all treated infections since birth and the subsequent risk of development of any treated mental disorder during childhood and adolescence.

Design, Setting, and Participants  Population-based cohort study using Danish nationwide registers. Participants were all individuals born in Denmark between January 1, 1995, and June 30, 2012 (N = 1 098 930). Dates of analysis were November 2017 to February 2018.

Exposures  All treated infections were identified in a time-varying manner from birth until June 30, 2013, including severe infections requiring hospitalizations and less severe infection treated with anti-infective agents in the primary care sector.

Main Outcomes and Measures  This study identified all mental disorders diagnosed in a hospital setting and any redeemed prescription for psychotropic medication. Cox proportional hazards regression was performed reporting hazard rate ratios (HRRs), including 95% CIs, adjusted for age, sex, somatic comorbidity, parental education, and parental mental disorders.

Results  A total of 1 098 930 individuals (51.3% male) were followed up for 9 620 807.7 person-years until a mean (SD) age of 9.76 (4.91) years. Infections requiring hospitalizations were associated with subsequent increased risk of having a diagnosis of any mental disorder (n = 42 462) by an HRR of 1.84 (95% CI, 1.69-1.99) and with increased risk of redeeming a prescription for psychotropic medication (n = 56 847) by an HRR of 1.42 (95% CI, 1.37-1.46). Infection treated with anti-infective agents was associated with increased risk of having a diagnosis of any mental disorder (HRR, 1.40; 95% CI, 1.29-1.51) and with increased risk of redeeming a prescription for psychotropic medication (HRR, 1.22; 95% CI, 1.18-1.26). Antibiotic use was associated with particularly increased risk estimates. The risk of mental disorders after infections increased in a dose-response association and with the temporal proximity of the last infection. The following were associated with the highest risks after infections:

  • schizophrenia spectrum disorders
  • obsessive-compulsive disorder
  • personality and behavior disorders
  • mental retardation
  • autistic spectrum disorder
  • attention-deficit/hyperactivity disorder
  • oppositional defiant disorder
  • conduct disorder
  • tic disorders

Conclusions and Relevance  Although the results cannot prove causality, these findings provide evidence for the involvement of infections and the immune system in the etiology of a wide range of mental disorders in children and adolescents.

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For more:  https://madisonarealymesupportgroup.com/2017/10/03/treat-the-infection-psychiatric-symptoms-get-better/

https://madisonarealymesupportgroup.com/2018/09/30/he-got-schizophrenia-he-got-cancer-and-then-he-got-cured/

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

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/2017/06/30/child-with-lymemsidspans-told-by-doctors-she-made-it-all-up/

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

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

https://madisonarealymesupportgroup.com/2018/06/04/ld-diagnosis-took-forever-because-of-mental-health-stigma/

Naturally Recovering Autism, Lyme Disease, & Coinfections

 58 Min

November, 2018

Naturally Recovering Autism (18) Lyme Disease and its Co-infections

With Karen Thomas and Dr. Jodie A. Dashore:  https://naturallyrecoveringautism.com/about/

Want to hear Thomas’ weekly radio show?  Go here and sign up:  https://naturallyrecoveringautism.com/weekly-radio-show/

 

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/

 

 

 

 

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

http://www.neuroimmune.org/interview-dr-kiki-chang?

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​Dr. Kiki Chang, is a child psychiatrist with over 22 years of experience in working with younger children, adolescents, adults and families. Formerly, Dr. Chang was Professor of Psychiatry and Behavioral Sciences at Stanford University School of Medicine and co-founder of the Stanford PANS Clinic. 
His specialty is working with youth and young adults who have or are at risk for serious mood disorders, such as depression or bipolar disorder as well as PANS/PANDAS and related neuropsychiatric disorders. Dr. Chang will be presenting a webinar August 27, 2019 for Continuing Medical Education Credit.

Thank you to Dr. Chang for allowing Foundation For Children With Neuroimmune Disorders president and founder, Anna Conkey to interview him. 

How did you first learn of PANS/PANDAS and what motivated you to begin treating children with PANS/PANDAS?

I first became interested when I realized that some patients who were referred to me for consultation with presumed bipolar disorder had an unusual onset and/or course.  These patients were also treatment resistant to standard treatments for bipolar disorder.  I discovered that many of them either met PANS criteria or had a periodic mood disorder that included elements of catatonia, or unusual mental status changes.  It made sense that underlying immunologic factors were at least partially responsible.  These patients responded to immunomodulatory treatments rather than typical psychotropics.

I also started collaborating with a pediatric rheumatologist, Dr Jennifer Frankovich, who was interested in the same patients from the other end – many of her patients with rheumatologic disorders also had psychiatric symptoms including OCD.  When we realized our shared interests and that these patients fell under the PANS rubric, we decided to join forces with Margo Thienemann and start the PANS Clinic at Stanford.

Do you ever treat children who did not have an abrupt or acute onset, and if so, do they respond similarly to children who did have an abrupt onset?

Yes I do, and not always.  Abrupt is an arbitrary but necessary concept – is it 48 hours? 72 hours?  In our 2013 Expert Consensus Diagnostic meeting we agreed on 72 hours but many kids with sub-acute onset, say one week, will still likely have the same underlying issues – it’s just that if you keep stretching out that onset time, then it becomes a gray area and muddies the research waters.  The longer and more gradual the onset, the less likely it will fit clear PANS criteria and also have the same treatment response.

How do you determine which patients with PANS would benefits from psychiatric medications and when to introduce them? 

I think our guidelines present this issue fairly well (first author Dr Margo Thienemann, JCAP 2017).  If needed, psychiatric support is always indicated – to help alleviate severe anxiety, agitation, sleeplessness, etc.  If patients are functioning OK without them, then I prefer to treat medically as long as possible before using psychotropics.  At some point, whether due to only partial treatment response medically, or other factors, psychotropics make a lot of sense.

Is there a particular class of psychotropic medication that tends to be more effective in children with PANS?

I have a particular fondness for lithium, in that for youth with severe mood disruption, including a bipolar like picture, even in a PANS context, it can be very useful.  Yes, lithium has potential side effects, but if it works, it works great.  I could go on and on about the benefits of lithium and how it is missing in our soil, water, and diets, but you probably have a word limit.

Are there any anomalies you see when treating children with PANS with psychotropic medications? 

Not sure what you mean – do you mean do SSRI’s sometimes worsen their course?  Sure, but not always.  Also antipsychotics sometimes cause EPS symptoms more so than would be expected.  Probably due to the dopamine dysregulation going on in the basal ganglia being compounded by a dopamine receptor antagonist.

Many medical providers have interpreted the JCAP treatment guidelines as step one, “Psychiatric and Behavioral Interventions,” step two, “Use of Immunomodulatory Therapies,” and step three, “Treatment and Prevention of Infections.” As one of the authors, was the intent to suggest psychiatric and behavioral interventions prior to other interventions or has this been misinterpreted? 

Yes, that would be a misinterpretation of the treatment guideline!  It’s really based on the patient’s presenting issues.  All three approaches should be considered initially.  The order depends on what’s going on with the individual patient.  If there is clear infection, then of course treat it first.  If psychiatric symptoms are severe and need urgent stabilization, then do that.  I had no idea people were interpreting the guidelines that way, I think the introduction paper to the guidelines explains the overall approach well.

Have you treated any patients with longstanding diagnoses of bipolar, schizophrenia, depression, or any mood disorders whose symptoms resolved with immunomodulatory therapies? 

Yes, on occasion.  I saw the recent report from Japan about the patient with schizophrenia whose symptoms resolved with bone marrow transplantation after a subsequently diagnosed cancer.  Absolutely make sense in SOME cases.  Great example – clozapine has a long history of working where other antispychotics have failed – for schizophrenia or bipolar disorder.  Why?  The receptor profile is similar to other atypical antipsychotics – so what sets it apart?  Well, the one main side effect people have to check for is agranulocytosis, or basically suppressing the body’s production of white blood cells.  Hmm…so a potential “side effect” is suppressing the immune system? Seems like not a coincidence to me – it probably affects the immune system in some way even when not having full suppression of neutrophil production…and that is in my opinion probably why it works when other medications don’t…that perhaps those patients have a more immune-mediated illness.

What is your approach to managing children with autism who develop neuropsychiatric symptoms? How does this differ from your approach to those without autism? 

Tough question.  Certainly just because you are diagnosed with an autism spectrum disorder doesn’t mean you CAN’T develop a PANS condition. Some might argue that these kids might be actually MORE susceptible to such a condition, given the propensity of kids with ASD to have OC symptoms and/or tics.  My approach does not differ really for treatment, but for diagnosis there must be a clear acute onset meeting PANS criteria in order to say, yes this is PANS and let’s treat accordingly.

If you could snap your fingers and have any research on PANS completed tomorrow, what would you most like to see studied?

Egads, great question, there are so many studies I would like to see done.  I’d have to say probably first to have placebo controlled steroid trials in youth with PANS.  Clearly clinically steroids can be effective, but it would help tremendously to have this proven in a RDBCT.  Oh and having a cleaner and longer IVIG trial completed – and if positive then getting an indication so that insurance companies will all have to cover it for these kids.

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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.