Archive for the ‘PANS’ Category

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?

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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

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.

 

 

 

 

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/

 

 

Pans, Autism, & the Immune System: An Interview With Expert Neurologist Dr. Richard Frye

http://www.neuroimmune.org/frye/pans-autism-and-the-immune-system-an-interview-with-expert-neurologist-dr-richard-frye

Dr. Richard Frye is a pediatric neurologist and Chief of The Division of Neurodevelopmental Disorders at Phoenix Children’s Hospital. He’s recognized as an expert on the treatment of autism.

Could you summarize the results of your recent study, “Intravenous Immunoglobulin For The Treatment Of Autoimmune Encephalopathy In Children With Autism”?

Our study recently published in Translational Psychiatry showed that a subset of children with autism spectrum disorder (ASD) who did not respond to standard interventions had autoantibodies in their blood targeting brain tissue which might qualify them for the diagnosis of autoimmune encephalopathy (AIE). The majority of children with ASD had elevated levels of autoantibodies measured by the Cunningham Panel™ (Moleculera Labs, Oklahoma City, OK) along with an elevation in the activation of calcium calmodulin dependent protein kinase II (CaMKII). A few patients had other brain targeted autoantibodies associated with AIE, such as voltage-gated calcium channels autoantibodies.

Some of the patient qualifying for the diagnosis of AIE were treated with intravenous immunoglobulin (IVIG) and their symptoms were monitored with two widely-used validated behavioral questionnaires, the Aberrant Behavior Checklist (ABC) and the Social Responsiveness Scale (SRS). Overall, IVIG was found to improve scores on both the ABC and SRS questionnaires and the great majority of parents reported improvements in additional symptoms related to ASD. The majority of patients experienced side effects from the IVIG treatment but most of the time these were mild and limited to the time around the infusion period. We were also able to divide the patients who received IVIG into those that demonstrate a positive response on the behavioral questionnaires and those that did not. This allowed us to determine if autoantibody titers of the Cunningham Panel™ collected prior to IVIG treatment could predict which individuals would response to IVIG. We found that, overall, the Cunningham Panel™ could predict which individuals would response to IVIG treatment with over an 80% accuracy rate and that the anti-dopamine receptor D2L and anti-tubulin antibodies were particularly sensitive to predicting response to IVIG treatment. 

What initially led to your interest in considering immune-mediated factors in autism? 

I have built my clinical practice with a vision of discovering new treatments for children with ASD. Some children with ASD do not respond to standard treatments or even new novel treatments and many times a standard medical workup does not reveal any additional obvious treatment targets. Such patients need to be investigated further to determine if there are other factors preventing them from developing skills or causing disruptive behaviors. For me, integrating an investigation of immune factors into my practice was the next step for further determining treatable factors for children with autism.

Do you have a sense for the percentage of children with autism who also have AIE?

The study describes 82 patients that were screened for AIE. This was about 8% of the patients seen in my autism clinic during the study period. 60% of these children were believed to probably have AIE, or about 5% of the children seen in my autism clinic. The percentage of the other 92% of patients seen in my autism clinic that might also have AIE is not known but it is very likely that a significant percentage of these children may have AIE. Many of these children were not investigated further because of various reasons including insurance coverage of testing, parental preference and/or difficultly in drawing blood. Further studies that systematically evaluate the general ASD population for AIE so we have a better understanding of the number of children with ASD that may benefit from treatment for AIE.

While acceptance of post-infectious autoimmune encephalopathy and pediatric acute-onset neuropsychiatric syndrome (PANS) continues to grow, there seems to be a bias within the medical community against considering PANS in children with autism. Would you agree or disagree with this statement and do you have a sense for why this might be? 

I believe that the idea that there are physiological abnormalities underling ASD which can be treated is novel concept that is faced by significant skepticism. Also many are skeptical that children with ASD can recover from their disorder at all. This skepticism, I believe, it based on an old concept of children with neurodevelopmental disorders having a “static encephalopathy” in which it is believed the brain is damaged and cannot improve. As new research connects neurodevelopmental and neurobehavioral disorders such as ASD with abnormal physiology and treatments that target these physiological abnormalities, evidence will become more compelling. As treatments are shown to improve function in disorders which previously had few effective treatments, I believe more people in the medical community will embrace treatments that help children with neurodevelopmental disorders.

Some physicians have questioned the validity of the Cunningham Panel due to the fact that many children with autism have positive results. The conclusion by some is that this means the test is producing false positive results. How would you respond to this? 

In our study 57% of the children we tested were positive for the Cunningham panel as we defined a positive test. We set a more stringent criteria as compared to others. For our clinical practice, the Cunningham panel is considered positive when one or more autoantibodies are elevated AND CaMKII is elevated. One of the reasons we examined the predictability of the Cunningham panel is to validate and refine the accuracy of the Cunningham panel. Our study points to two particular autoantibodies which appear to predict response. Since the components of the Cunningham panel have been developed based on converging animal and human basic research, it is very clear that these components are very likely to be very meaningful. It is likely that different components (or combination of components) will identify different subgroups of neurobehavioral, neuropsychiatric and/or neurodevelopmental disorders. Further studies are needed to further refine the most accurate use of interpreting the components of the Cunningham panel.

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

Abrupt onset of neurological, behavioral or psychiatric systems as well as abrupt loss of previously acquired skills are red flags for an underlying metabolic or immunological disorder. All three cases described in our recent paper had abrupt onset of symptoms and approximately one-third of children with ASD are estimated to have neurodevelopmental regression. However, there are children without a history of an abrupt onset of systems who also respond to immune and metabolic treatments that target medical abnormalities usually associated with an acute onset of disease. Thus, I do not usually use the history of abrupt symptoms onset to guide my workup. Treatments I prescribed are guided by biomarkers.

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

I have found that many children with neuropsychiatric symptoms without ASD have similar metabolic and immune abnormalities as those with ASD. I use the same approach for such children and have had successes in improving their symptoms and ability to function.

Is there any research you’re working on currently that you’d be willing to tell us about?

At this time I am working with several collaborators on the interaction between metabolism and the immune system. Emerging research demonstrates connections between the immune system and metabolism, both mitochondrial disorders and oxidative stress. We have recently published a review article on mitochondrial dysfunction in autism which discussed this (https://www.ncbi.nlm.nih.gov/pubmed/30039193) and previously Dr Rossignol and I published a review article outlining the evidence for connection between these abnormalities in the brain of children with ASD (https://www.ncbi.nlm.nih.gov/pubmed/24795645). I think this is a promising area of research which may pave the way for new treatment targets.

You’ve published “Autism Spectrum Disorder in The Emergency Department: Looking Beyond Behavior.” What should ER physicians, primary care providers, and specialists be considering when a patient with autism presents with acute behavioral or neuropsychiatric symptoms? 

It is very important to consider that there may be medical issues that can be driving behavioral decompensation. These medical abnormalities do not have to be complicated immune and/or metabolic abnormalities but may be more basic problems such as sleep disruption, gastrointestinal disorders and/or anxiety which may need to be evaluated and addressed. There may also be other underlying more complicated metabolic and/or immune disorders, so it is important to consider referring the child to a practitioner experienced in looking into these treatable abnormalities. Most importantly, it is important to have a vision of try to treat the underlying biological cause of the symptoms rather than just treating the behavior with medications to suppress it. Indeed, disruptive behavior may be signaling that something that is not obvious needs to be addressed and suppressing this signal may simple make a untreated medical problem worse by allowing it continue and progress without appropriate treatment.

-The Foundation For Children With Neuroimmune Disorders thanks Dr. Richard Frye for taking the time to allow FCND Founder and President Anna Conkey to interview him. 

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I Know You’re In There: Restoring Balance preview

Published on Aug 15, 2018

Sometimes our struggles shape who we are! But don’t you wish we didn’t have to struggle so much with our children who are on the spectrum? This is a 90 second clip of Ryan Hinds who is recovered from autism. Ryan’s parents were told there was no recovery from autism. There was no cure. There was no hope. The “experts” said Ryan should be institutionalized. But they were wrong. Ryan’s recovery was not miraculous. It was the result of having his medical illness treated. Ryan now works as an aerospace engineer. And what his parents wanted most for their son actually happened…he is happy, has friends, and leads a typical life. You can preview Ryan’s recovery story called I KNOW YOU’RE IN THERE on Amazon or at http://a.co/a7PiCyQ
Ryan’s recovery story is just one of the many in the documentary RESTORING BALANCE: AUTISM RECOVERY https://www.restoringbalanceautism.com/  (Many helpful videos and information in this link)
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According to a prominent Wisconsin LLMD, 80% of his Autistic and PANS patients have tick borne disease as well.  Please see:  https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/

The 3 PANS Myths That Are Ruining Lives

https://thedreamingpanda.com/2018/07/11/3-myths-about-pans-ruining-lives-causing-controversy/  From The Dreaming Panda, pen name, Iris Ainsley

These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine

PUBLISHED ON July 11, 2018, reprinted with permission

In 2012, when I developed an extreme case of Obsessive-Compulsive Disorder overnight, all I wanted was to get better—not to spend the next six years fighting to get treatment for a “controversial” disease. However, when conventional therapies failed, and I rapidly declined after Strep and mono two years later, only steroids were able to help my severe psychiatric symptoms. It was then that I realized the truth wasn’t always easy to accept:

I DIDN’T HAVE A MENTAL ILLNESS—I HAD A POORLY UNDERSTOOD CONDITION CALLED PANS.

Because it’s a physical illness that attacks the brain, even though it can look identical to mental diagnoses like OCD, Tourette’s, anorexia, and even psychotic disorders, therapy and psychotropic medication aren’t enough—at best, they’re a bandaid. Yet most doctors don’t understand this, and people can spend years getting ineffective and inappropriate psychiatric care when medical treatment could’ve cured them.

Unfortunately, a recent paper published in the Journal of Pediatrics has thrown up a roadblock for the PANS community’s tireless efforts to improve a desperate situation that affects at least 1 in 200 children and teens—plus untold numbers of adults like me who grew up and slipped through the cracks. In a time when we’ve finally gained some ground with doctors treating it at the NIH, Stanford, Yale, Columbia, Georgetown, and more, it felt like a slap in the face.

The paper’s conclusions go against all of the expert-recommended treatments that have saved my life, including IVIG, steroids, and antibiotics (collectively referred to as “immunomodulation” in the publication). It perpetuates myths rather than advancing science, while underscoring the sharp divide between doctors in academia and doctors in the trenches getting people better.

Although I don’t expect to change the authors’ minds with this post, as an anonymous blogger with a mere bachelor’s degree, I feel it’s important to speak up against three particularly egregious points in the paper so that maybe other researchers will take notice and do a better job promulgating scientific inquiry…

PANS IS NOT A MILD ILLNESS.

The most troubling aspect of the article in my opinion is what the authors seem to think defines “PANDAS/PANS.” One of the most revealing quotes says:

“We recommend that clinicians do not perform the PANDAS/PANS medical diagnostic testing in otherwise healthy children with mild to moderate, nondisabling OCD or tics. In our experience, this is the majority of children referred for PANDAS or PANS.”

It’s true that some cases of PANS/PANDAS can be mild, but if the authors think most cases of PANS are mild, then I question if they’ve ever really seen it.

I’ve lived this disease myself for over eleven years, I’ve talked to dozens of families, and I can say that our PANS is not their PANS…

  • PANS is the quiet five-year-old girl who suddenly grows violent towards her fellow kindergarteners, can no longer go to school, starts wetting the bed and using diapers again, and can only wear one dress because all other clothes make her skin feel on-fire.
  • PANS is the grade-school boy who develops an eating disorder out of nowhere, can only eat small amounts of soft foods, loses 15% of his already slender body weight, has constant pain from incessant tics and twitches, and breaks down into tears and tantrums whenever his parents leave his sight.
  • PANS is the bright teenager who can no longer do basic math, whose handwriting is suddenly illegible, who spends four hours getting ready every morning, and who has to sleep with her parents because of nightmares and terrifying nighttime hallucinations.
  • And let’s not forget that PANS is also the adult who has spent most of his life in and out of psych wards and group homes, who has a dozen psychiatric and neurological diagnoses, who has tried every medication imaginable with little success, and who can’t finish school or hold a job.

PANS is debilitating, all-consuming, and, quite frankly, it’s hell on earth. It’s anything but “non-disabling OCD and tics.” And for the many with restrictive eating—one of the main diagnostic criteria for PANS—they are absolutely NOT physically healthy, either.

I’ve met all of the above people, and when no psychiatric interventions were enough, antibiotics, steroids, and IVIG—the very treatments the authors dismiss—brought them back to life.

PANS ISN’T AN EXCUSE TO AVOID PSYCHIATRIC CARE.

I’m also concerned that the authors don’t understand that many of us have already tried every traditional psychiatric treatment under the sun—and we’re still sick…

“The diagnosis of PANDAS or PANS distracts families from pursuing clinically important psychiatric and behavioral interventions and sometimes leads to inappropriate, expensive, and risky treatments.”

Personally, I tried every anti-depressant that exists plus years of therapy. True, some of it helped me to a degree, but nothing was able to save me when I truly lost my mind and fell off a cliff in 2014…

I woke up with wild involuntary movements all over my body. Rage. Panic attacks. Cognitive decline. Hallucinations. Delusions. Suicidal depression. Loss of coordination. Inability to focus. Constantly falling asleep all day long. In short, I completely lost who I was as a person, and doctors said they had nothing else to help me.

Pursuing a PANS diagnosis wasn’t a way to avoid psychological care—it was a last resort and a Hail Mary to save me from intractable symptoms. PANS families would love nothing more than for mainstream psychiatric interventions to be enough, and they’re often the first thing families have tried before moving onto the so-called “expensive and risky” medical treatments.

Why would any loving parent in their right mind subject their child to needles and IV sticks and hospitalizations for procedures like plasmapheresis, IVIG, and Rituxan? Why would your average middle-class family risk their financial security to travel hundreds of miles to go to out-of-network doctors and pay out of pocket for the multi-thousand-dollar aforementioned treatments?

The above quote from the paper seems like a gaslighting of parents who are doing everything they can to get their critically ill children better—parents who have already tried every psychiatric intervention known to humankind.

As it turns out, for me and many others, the only “distractions” are the psychiatric treatments—a few days of steroids helped me more than eight years of psychotropic medication and therapy. I took 50 mg of Prednisone for five days in 2014, and all my symptoms abated. Two IVIG procedures later made the effect more permanent.

COMPLETELY DISMISSING CLINICAL EXPERIENCE IS MISGUIDED.

“There is scant scientific evidence that the treatment of tics, OCD, presumed PANDAS or PANS with antibiotics or immunomodulation is effective… The immunotherapy guidelines are based on ‘the expert opinions and clinical experiences of the members of the PANS Research Consortium.’ Thus, none of these guidelines followed standard practices for unbiased systematic review of the evidence…

We strongly emphasize that it is essential that the treating physician be cognizant of the lack of evidence supporting treatment recommendations when considering whether or not to follow the PANS Research Consortium’s recommendations, especially regarding immunomodulation.”

This, right here, is the fundamental flaw and most appalling offense of the whole paper. The authors completely dismiss the empirical evidence for the treatments that PANS experts successfully use to get their patients better.

In all fairness, when I combed through the article, I found many compelling points about everything we don’t know about PANS. And I think members of the Consortium—the doctors who are effectively treating PANS—would be the first to admit that we’re only in the infancy of understanding the connection between the immune system and psychiatric disorders. No one denies that we desperately need more randomized, placebo-controlled studies to validate the treatments that the Consortium recommends.

However, there are thousands of people suffering today that can’t wait for enough studies to be funded and executed to rewrite the medical textbooks.

People with PANS are hurting right now, and doctors in the Consortium have put their reputations on the line to find treatments that can help. The greatest medical advancements come from clinical experience that is later corroborated through placebo-controlled studies.

If doctors must rely solely on published medical studies and can’t trust clinical experience, then a doctor on their first day in private practice who has read many journals is just as good as a doctor who has practiced for fifty years at a world-class hospital. Clearly, this can’t be the case… Or do the authors simply believe that the only clinical experience that can be trusted is their own?

A good scientist should take an unbiased approach to evaluating how best to treat PANS by stepping back and asking why the Consortium’s immunotherapy treatments have helped people. And if there are studies that contradict the testimonies of dedicated doctors and hundreds of patients, then how are people getting better? What are we doing differently in the studies versus real life? Are there any alternative explanations? Is there something we haven’t yet discovered that could explain it?

Until everyone lets go of their personal biases, science cannot progress. In the meantime, those of us with this tragically misunderstood condition are caught in the crosshairs of controversy, with no choice but to pursue newly discovered treatments when the more established therapies have failed.

If the authors are right that immunomodulation doesn’t work, and all of the improvements in people who have had it could be attributed to psychiatric interventions, then the worst that’s happening now is that families using these treatments are wasting some time and money—but the kids are still coming out the other side with their lives intact.

If, however, the authors are wrong, and PANS is a real disease that can only be cured with antibiotics and/or immune therapies, then there are thousands of people needlessly suffering from a treatable medical problem. The implications of this, with the loss of human potential, the burden on families, and the wasting of already scant mental health resources, is incalculable.

As an adult who evaded diagnosis for eight years, and who knows full well that I might not be alive without immunomodulation and antibiotics, I urge whatever scientists may read this to all work together to help us figure out this devastating disease.

My illness has no regard for medical politics and the status quo of mental healthcare—what people like me need is effective treatments and competent doctors. I challenge any clinician faced with a family seeking help for suspected PANS to listen and think critically before dismissing us. And I admonish all of you to put aside your biases and use your expertise to help those of us looking to people like you to restore our lives.

Follow me:  Facebook – The Dreaming Panda Blog:  https://www.facebook.com/The-Dreaming-Panda-Blog-1941754169186141/
Twitter:  https://twitter.com/dreamingpanda1

https://thedreamingpanda.com/whats-pandas/  A great read on what exactly PANDAS/PANS is.

https://thedreamingpanda.com/my-story/  Iris’s story.

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**Comment**

According to one prominent Wisconsin LLMD, 80% of his PANDAS/PANS patients has Lyme/MSIDS.  It’s not uncommon for patients to suffer with numerous pathogens and require numerous treatment modalities.

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

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

https://madisonarealymesupportgroup.com/2017/10/09/today-is-panspandas-awareness-day/

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

https://madisonarealymesupportgroup.com/2015/10/06/november-dr-brown-on-msids-pandas-pans/