PANS/PANDAS - Autism Research Institute https://autism.org/category/pans-pandas/ Advancing Autism Research and Education Tue, 30 Jan 2024 00:41:57 +0000 en-US hourly 1 https://wordpress.org/?v=6.5.3 Challenges of Medical Care for Seniors https://autism.org/medical-care-for-seniors-autism/ Wed, 12 Jan 2022 06:00:03 +0000 https://last-drum.flywheelsites.com/?p=14144 Following introductions by Petra Dilman and Dr. Stephen Edelson, Margaret Bauman, MD, discusses the many medical challenges those aging with autism face. She highlights the lack of medical training and research for adults and seniors with autism and underscores the need for increased education and advocacy. The speaker outlines challenges associated

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Following introductions by Petra Dilman and Dr. Stephen Edelson, Margaret Bauman, MD, discusses the many medical challenges those aging with autism face. She highlights the lack of medical training and research for adults and seniors with autism and underscores the need for increased education and advocacy. The speaker outlines challenges associated with preventative screenings, diagnosis of co-occurring conditions, primary care physicians, examination time constraints, and low government and health insurance reimbursement. Bauman speaks from her professional experiences and asserts the need for collaborative action to prepare for a better future. She closes with a question and answer session where she discusses guardian assignments and policy needs, disease prevalence in autism, and more.

This is a joint presentation by ARI and The World Autism Organisation.

Handouts are online HERE

In this webinar: 

0:00 – Petra Dilman – World Autism Organization
5:20 – Dr. Stephen Edelson – ARI
7:30 – Dr. Margaret Bauman – child psychologist and why she speaks on adult experiences
10:45 – Medical problems for aging autistic adults
12:00 – ER, hospitals and insurance providers
14:30 – Medical concerns for adults
18:20 – Provider limitations
21:20 – Incentives for primary care physicians
22:10 – Diagnostic challenges
24:30 – Atypical behaviors as signs of discomfort
27:14 – Behaviors that suggest GI discomfort
31:28 – Summary of diagnostic challenges
32:20 – Medical conditions
35:08 – Medically related conditions
38:10 – Mental health conditions
39:15 – Dementia surveys and queries
40:40 – Illnesses common in old age and lack of research
41:48 – Preventative screenings
43:34 – What needs to be done
46:33 – Parting words
48:20 – Q & A

Petra Dilman introduces the World Autism Organization and gives a brief history of their work and collaborations with ARI (00:00). Dr. Stephen Edelson outlines the history and purpose of ARI (5:20) and introduces the presenter, Dr. Margaret Bauman, MD (6:30). Bauman emphasizes the importance of providing optimal – not minimal – medical care for adults and seniors with autism. She explains that due to the lack of medical care available to autistic adults, many pediatric practitioners have been obliged to carry on treating patients into adulthood (9:00). 

Presently, she continues, individual needs and proper support mechanisms for autistic adults and seniors remain largely unknown (7:30). Bauman lists some of the medical challenges faced by aging autistic adults (10:45) and discusses some in detail:

1. Finding primary care physicians (PCP) willing to accept adults with autism or who have any expertise or experience to do so. 

Few practitioners meet these parameters (11:30). Bauman describes this gap as a PCP shortage (18:25), noting the lack of medical education surrounding autism spectrum disorder. She states that, given the prevalence of autism, it is “inconceivable, regardless of what specialty somebody may eventually go into, that they aren’t going to come across one or more patients on the autism spectrum” (45:06). Further, time constraints on PCP visits (i.e., four 15-minute appointments per hour) do not allow enough time to assess many individuals with autism (19:00). Government medical records require thorough paperwork documentation as well, and there is relatively low Medicaid/Medicare reimbursement (20:40). Overall, she continues, incentives for PCP to take on patients with autism are minimal. Therefore, individuals needing such services often have to use academic hospitals where wait lists are three to six months long (21:20). 

2. ER and hospital staff (12:00) and insurance providers (13:30) are not prepared to deal with the complex multiplicity of care that accompanies autism.

3. Medical conditions often present differently in adults with autism, creating diagnostic challenges (22:10). 

For example, Bauman continues, autistic individuals often have difficulty verbalizing or pinpointing issues or discomfort (i.e., where it hurts, how it hurts, what the problem is) due to sensory processing differences and communication difficulties (23:40). She notes that atypical or disruptive behaviors may be signs of pain and discomfort, even if individuals cannot communicate their pain (24:30). The speaker shares personal experiences when she sent individuals with symptoms not generally associated with gastrointestinal (GI) issues to the gastroenterologist, where they were adequately diagnosed (24:50). She asserts that practitioners need to “… think beyond their own discipline” and consider unusual behaviors as interconnected. She reiterates that, due to the lack of education surrounding autism, even specialists may not know how to diagnose autistic adults and seniors (23:00) properly and urges viewers to “think beyond the obvious” (26:30). Bauman highlights the prevalence of GI issues in autism and asserts that practitioners and specialists must be trained on how differently symptoms present compared to the non-autistic population (30:30).  

The presenter lists medical conditions that commonly co-occur with autism, such as seizures, metabolic disorders, diabetes, and more (32:20). Bauman describes each condition and its relevance to autistic adults (33:30), noting the lack of routine screenings for adults and seniors with autism (41:48). She states that chronic pain, dental issues, sleep disorders, motor challenges, and even sensory processing issues can be significant factors that are part of, or contributing to, such medical conditions (35:08). Bauman touches on the acceleration of medical conditions with age, especially within the autistic population, and discusses gaps in research on diseases related to autistic adults and seniors (36:20). 

Bauman asserts that there should be more stress on the mental health conditions associated with autism, especially during and following the pandemic (38:10). Such conditions include frequent mental distress, anxiety, depression, PTSD, social isolation, and dementia (38:10). She discusses recent studies showing an increased diagnosis of dementia in adults with autism and questions how one defines such conditions in individuals with potential developmental delays (39:15). Bauman highlights the evident lack of research and publications on other illnesses common in old age (i.e., multiple sclerosis, Alzheimer’s) (41:00) and posits that we have little idea what these issues look like in adults with autism (40:40). 

The speaker reiterates the need to create methods by which we can begin to evaluate autistic seniors and adults in meaningful ways (44:10). She underscores that medical problems present in childhood often persist throughout the lifespan, along with other conditions that occur with aging (43:34). She tells of personal experiences consulting rehabilitation hospitals when autistic adults are admitted and notes how unprepared many are for communicating with and treating these patients (45:30). Bauman says that “family and professional advocacy for policy change is sorely needed” as it will take “several villages” to begin to understand how to effectively care for and assist autistic adults and seniors (46:18). She emphasizes preparing for the future and bringing greater awareness of the needs of aging autistic adults before opening the question and answer session (48:20). 

About the speaker:

Margaret Bauman, MD, is a pioneer in the study and treatment of Autism and is highly respected by her fellow clinicians and patients for the level of clinical care she provides and the advances that she has contributed to in the field. Dr. Bauman is a Neurologist and specializes in the diagnosis and treatment of Autism and various neurological disorders in children, adolescents, and adults to include learning and developmental disabilities, seizures, cerebral palsy, and neurogenetic disorders. 

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]]> Executive Function and Autism https://autism.org/exeuctive-function-autism/ Mon, 22 Nov 2021 17:41:06 +0000 https://last-drum.flywheelsites.com/?p=13583 Greg Wallace, Ph.D., discusses executive functioning and its impacts on lived experiences across the lifespan in autism. He defines executive function (EF) as it relates to cognitive processes, the neuropsychological framework, and real-world outcomes. The presenter provides historical context for EF within autism, highlighting flexibility as the most common EF difficulty for autistic individuals.

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Greg Wallace, Ph.D., discusses executive functioning and its impacts on lived experiences across the lifespan in autism. He defines executive function (EF) as it relates to cognitive processes, the neuropsychological framework, and real-world outcomes. The presenter provides historical context for EF within autism, highlighting flexibility as the most common EF difficulty for autistic individuals. He outlines recent studies on EF profiles of autistic children, adolescents, and adults, underscoring the connection of EF to quality of life and successful daily living skills across autistic adulthood. Wallace highlights the critical importance of EF in real-world outcomes and notes the severe lack of support beyond early adulthood before starting the question-and-answer session.

Learn more about our speaker, Greg Wallace, Ph.D. HERE
Take the knowledge quiz for this webinar HERE

In this webinar: 

0:38 – Speaker introduction
1:46 – Neuropsychological framework
3:28 – What is executive function (EF)
5:41 – EF demonstration
6:42 – Why do we care about EF?
7:54 – EF and autism
12:20 – Common EF challenges in autism
13:36 – Lab-based vs real-world measures
16:32 – Behavior Rating Inventory EF (BRIEF)
19:08 – Research questions
20:38 – Study 1: EF profile child/adolescent
24:11 – Study 2: EF profile young adults
26:30 – Conclusions: EF profiles in autistic children/adolescents and adults
28:52 – Study 3: Adult outcomes in autism
31:20 – Participant characteristics
32:00 – Outcome measures
35:24 – Regression methods
36:30 – Results
39:09 – Daily livings skills results
40:00 – Conclusion: EF outcomes across autistic adulthood
41:34 – Future research needs
43:26 – Summary and conclusions
44:46 – Acknowledgments
45:15 – Q & A – contact information

What is executive function?

Executive function (EF) is an umbrella term describing a set of cognitive processes that dictate behavioral regulation and influence the ability to attain proximal goals. These processes include working memory, cognitive flexibility, inhibitory control, and more (3:28). Wallace demonstrates how EF processes regulate thoughts, actions, and emotions to achieve goals like math homework, group chats, and adaptive functioning (5:41). Therefore, he continues, EF is critical to independence and our ability to function optimally in daily life (6:27) as it provides context and longitudinal predictability for real-world outcomes (6:42). 

EF was first linked to autism in the 1970s (7:54) and was described using the Wisconsin Card Matching Test, which assesses cognitive flexibility (11:50). Cognitive flexibility, the most frequently occurring EF challenge in autism, affects one’s ability to transition from one activity to another, accept changes in routines, and manage violations of expectations (12:20). 

Research questions and methods

Wallace details the Behavior Rating Inventory of Executive Function (BRIEF) (16:32) and presents research questions addressed by him and his team (19:40): 

  1. What is the profile of real-world EF problems among autistic children, adolescents, and young adults? 
  2. Do these EF issues predict co-occurring psychopathology (i.e., anxiety and depression symptoms), which negatively impact outcomes in autistic children, adolescents, and young adults?

Wallace and his colleagues conducted three studies to address these questions. Each study utilized the BRIEF and a second rating scale specific to participant age and study purpose. Results split aspects of EF into two categories: The behavior Regulation Index (BRI), which includes flexibility and inhibition, and the Metacognition Index (MI), including working memory and planning/organizing. Researchers ran controlled regressions (age and IQ) for each study.  

Study 1: Executive function profile of autistic children and adolescents

210 autistic children and adolescents (5 – 18 years old) without intellectual disability (83% male) completed the BRIEF and the Child Behavior Checklist (CBCL) (20:38). The EF profile showed clinically significant scores (1.5 standard deviations) across numerous domains, with the highest in flexibility (21:10). Regression analyses revealed that BRIEF indices predicted symptoms of depression and anxiety well beyond the influence of age and IQ. Specifically, BRI predicted anxiety symptoms, and BRI & MI predicted depression symptoms (22:33). 

Study 2: Executive function profile of autistic young adults

Thirty-five autistic young adults without intellectual disability (31 male) completed the BRIEF and the Adult Behavior Checklist (ABCL) (24:11). Results showed high scores across the board, with planning and organizing as the most clinically significant. Regressions found that BRI predicted anxiety symptoms while MI (alone) predicted depression symptoms (24:51). 

Wallace asserts that these two studies reveal autistic children, adolescents, and young adults have difficulties with flexibility. However, MI issues are more prominent than BRI issues in autistic young adults which could be due to earlier maturation of BRI in the non-autistic population or expectations of adulthood that align with MI skills (26:30). As MI and BRI predicted depression and anxiety symptoms, the speaker posits that EF as a treatment target could have positive downstream influences on co-occurring symptoms that negatively impact life satisfaction and quality (28:14). 

Study 3: The role of executive function challenges in outcomes for autistic individuals

This study aimed to evidence the way EF challenges play in outcomes (community-based paid employment) for autistic individuals, especially those with intellectual disabilities (28:52). Six hundred twenty-eight participants with an autism diagnosis (59% female) from diverse socioeconomic backgrounds with an average age of 39 (31:20) completed a series of self-reports and outcome measures (BDEFS, FS-R) as well as subjective quality of life and daily living skills assessments (WHOQOL-BREF, ASQOL, W-ADL) (32:00). Controlled linear regressions (35:24) revealed that ER difficulties are related to lower physical and psychological quality of life, and that social relationship quality of life decreases with age, autistic traits, and EF. Increased EF correlates with lower autism-specific quality of life (36:30), and living skills increased with age, although low inhibitory control and flexibility correspond with poorer daily living skills (39:09). 

Conclusions

Based on these findings, Wallace concludes that EF is linked to subjective quality of life and daily living skills outcomes across autistic adulthood. Further, he continues, such links between EF and adult outcomes suggest that differential interventions, accommodation, and support services must be based on a desired development or improvement (40:00). The speaker asserts that these studies evidence the critical importance of EF to real-world outcomes in autism. While intervention developments for children and adolescents are well underway, services and supports beyond early adulthood are severely lacking (43:26). Wallace touches on future research directions (41:34) before opening the question and answer session, where he discusses apparent gender biases and more (45:15).

Looking for more information on this topic? Visit our playback and knowledge quiz for Sensory Strategies at Home presented by Moira Peña, BScOT, MOT, OT Reg HERE

About the speaker:

Greg Wallace, Ph.D., is an Assistant Professor in the Department of Speech, Language, and Hearing Sciences at The George Washington University. His research focuses on neuropsychological and structural brain development in autism spectrum disorder and other neurodevelopmental disorders across the lifespan and their impacts on real-world outcomes. He is also particularly interested in eating-related behaviors and their cognitive and neural correlates in typical and atypical (e.g., autism spectrum disorder) development. Dr. Wallace has published extensively and presented his work widely on these and related topics.

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]]> Systemic Inflammatory & Autoimmune Diseases—PANS https://autism.org/pans-and-autism-2021-updates/ Wed, 08 Sep 2021 18:45:21 +0000 https://last-drum.flywheelsites.com/?p=13029 Jennifer Frankovich MD MS, clinical professor at Stanford University/Lucile Packard Children’s Hospital, discusses the co-occurrence of systemic inflammatory and autoimmune diseases – including the overlap between pediatric acute-onset neuropsychiatric syndrome (PANS) and autism. She outlines the presentation of classic rheumatologic diseases noting the prevalence of mental health symptoms and provides clinical criteria

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Jennifer Frankovich MD MS, clinical professor at Stanford University/Lucile Packard Children’s Hospital, discusses the co-occurrence of systemic inflammatory and autoimmune diseases – including the overlap between pediatric acute-onset neuropsychiatric syndrome (PANS) and autism. She outlines the presentation of classic rheumatologic diseases noting the prevalence of mental health symptoms and provides clinical criteria for PANS. Frankovich discusses PANS as a relapsing/remitting condition and explores the clinical management options, citing recent studies on steroid use. She concludes by reemphasizing the association of psychiatric symptoms with autoimmune and rheumatologic diseases and states the importance of post-flare rehabilitation before opening the floor to questions.

Take the knowledge quiz for this presentation HERE

In this presentation

3:20 – Inflammatory diseases with comorbid psychiatric symptoms
20:20 – PANS clinical criteria
34:54 – PANS model
22:15 – Prevalence of PANS comorbid traits
23:48 – Non-specific inflammatory signs
29:00 – Clinical Management of PANS
33:30 – Study: Impact of steroid treatments on PANS episode duration
37:15 – Study: Monocyte subsets associated with PANS clinical states
44:16 – Q & A session

Summary

Classic rheumatologic conditions such as Lupus (4:30), Behçet’s syndrome (5:43), Sjögren’s syndrome (9:30), Scleroderma (9:53), Spondyloarthritis (10:31), Inflammatory bowel disease (11:30), Psoriasis/Psoriatic Arthritis (12:03), CNS Vasculitis (13:05), and Sydenham Chorea (SC) (13:20) are associated with psychiatric symptoms such as OCD, anxiety, depression and/or other behavior changes. PANS (20:20) also presents with acute onset of OCD or eating disorders. These psychological comorbidities – specifically OCD – overlap with common symptoms of autism spectrum disorder making inflammatory diseases difficult to diagnose in children on the spectrum. Psychiatric symptoms in individuals with autism can distract from rheumatologic symptoms due to subtle/masked physical manifestations and/or communication difficulties. The onset of certain diseases – especially PANS – can also exacerbate psychological symptoms of ASD and often lead to autoimmune disease diagnosis (2:35).

There is a historic association of pediatric streptococcal throat infections with mental disorders – particularly OCD and tic disorders (18:00). This is especially true in cases of SC and PANS/PANDAS where patients generally present with symptoms 1 – 8 months after exposure to a Group A Streptococcal infection (13:20). Studies have also shown increased volume of basal ganglia during the first episode(s) of CS and PANS (18:42) demonstrating onset of encephalitis. PANS cases present with an acute onset of OCD or eating restrictions and at least 2 of seven comorbid symptoms (20:20). Patients display a very abrupt deterioration in performance, behavior, and mental stability – parents have described it as a personality shift overnight.

Clinical management of PANS (29:00) varies based on each patient. Treatments are generally approached in three stages:

  1.   Find and treat active infections (i.e. strep, sinusitis, etc.)
  2.   Treat post-infectious inflammation and autoimmunity (if present)
  3.   Note that inflammation can cause tissue injury making post-flare rehabilitation highly important (40:00)
  4.   Treat psychiatric symptoms

Post-infectious inflammation is often treated with steroids (NSAIDS, IVIG, etc.). 5 day oral steroid bursts have proven helpful if administered at the beginning of an episode and IVIG trials are taking shape currently (32:00). PANS is understood as a relapsing/remitting disease (21:35) and most patients will return to baseline within a few months after the initial episode. Later, likely following some sort of infection, they will have a relapse episode lasting around 3 months. If flares are caught quickly and treated properly, over time episode length can shrink. However, without treatment, after 4 or 5 flares the symptoms become more chronic (33:30). Episodes generally decrease with age but it is suspected that patients maintain the predisposition to episodes throughout their lifetime and a number of patients develop autoimmune diseases over time (27:30).

Frankovich concludes (38:42) by emphasizing the strong association of post-infectious inflammatory disorders and autoimmune diseases with psychiatric symptoms. She notes that psychiatric symptoms can precede full presentation of inflammatory conditions and urges clinicians and parents to use PANS evaluation guidelines when a child with ASD suddenly develops new psychiatric traits. During the Q&A Frankovich comments on differences between regressive autism and PANS, treatment options, limitations to diagnosis and clinician assistance, international programs and more.

For treatment recommendations and steroid regimens see appendix B of the treatment guidelines found at med.stanford.edu/PANS (publications tab).

About the speaker:

Dr. Jennifer Frankovich is a Clinical Professor in the Department of Pediatrics, Division of Allergy, Immunology Rheumatology (AIR) at Stanford University/Lucile Packard Children’s Hospital (LPCH). Her clinical expertise is in systemic inflammatory and autoimmune diseases that co-occur with psychiatric symptoms. She completed her training in pediatrics, pediatric rheumatology, and clinical epidemiology at Stanford University/LPCH. In addition to generating clinical data to better understand the PANS illness, she is collaborating with ten basic science labs who aim to understand the immunological underpinnings of the illness.

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]]> PANS/PANDAS in Children with Autism https://autism.org/pans-pandas-in-children-with-autism/ Wed, 26 Aug 2020 09:58:21 +0000 https://last-drum.flywheelsites.com/?p=8628 The information below is from the 2019 ARI webinar, PANS/PANDAS - Research Updates In rare cases, some children may experience the sudden onset of Obsessive-Compulsive Disorder or eating disorders. This pediatric acute-onset neuropsychiatric syndrome is commonly called PANS. PANDAS is a subtype of PANS with a specific known cause, exposure to a

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The information below is from the 2019 ARI webinar, PANS/PANDAS – Research Updates

In rare cases, some children may experience the sudden onset of Obsessive-Compulsive Disorder or eating disorders. This pediatric acute-onset neuropsychiatric syndrome is commonly called PANS. PANDAS is a subtype of PANS with a specific known cause, exposure to a strep infection. While PANS/PANDAS occurs mostly in children who do not also have Autism Spectrum Disorder, in rare cases, a child may have both conditions. Recognizing and diagnosing PANS/PANDAS in a child with ASD can be especially challenging because many of the symptoms overlap.

Signs and Symptoms of PANS/PANDAS

Between 1 and 3% of youths have OCD. Among children with OCD, up to 5% may meet the criteria for PANS/PANDAS. While as many as 17% of children with autism also have OCD, it is very rare that their OCD is linked to PANDAS. Even so, the situation can arise. When it does, it can be difficult to separate the symptoms of autism from signs of PANS/PANDAs since many of the symptoms and comorbidities overlap.

While PANS is a group of symptoms without an undetermined cause, PANDAS does have a clear trigger. In most cases, the onset of PANDAS is triggered by exposure to Group A Streptococci, commonly known as strep throat or a strep infection. Other microbes, including Lyme and Mycoplasma, may also be related to PANDAS. When a child with genetic susceptibility (2-5% of the population) is exposed to these microbes, it causes a misdirected immune response, which leads to brain inflammation. This can manifest as PANDAS. 

PANS/PANDAS, autism

PANS/PANDAS is marked by the abrupt onset of OCD or Anorexia. With the concurrent onset of at least two of seven signs:

  1. Anxiety
  2. Behavioral developmental regression
  3. Emotional liability or depression
  4. Irritability aggression or severally oppositional behavior
  5. Deterioration in school performance
  6. Sensory or motor abnormalities
  7. Somatic signs/symptoms, especially insomnia and urinary symptoms

PANDAS is essentially a form of autoimmune encephalitis, a complex set of brain disorders, characterized by autoimmune induced neuroinflammation. It is diagnosed only when symptoms are not better explained by other neurologic or medical disorders such as Sydenham’s chorea or Tourette Syndrome.

Who gets PANS/PANDAS?

By definition, PANS/PANDAS affects children. While it may be diagnosed in children between the ages of 3 and 12, the average age of onset is between 7 and 8 years old. It is most common in children between Kindergarten and second grade.

PANS/PANDAS seems to affect all socio-demographic groups equally. However, researchers have noticed increased rates of these conditions in families with a history of acute rheumatic fever or OCD. For a more in-depth look into the history and impacts of PANDAS, view the webinars Research Updates – PANS/PANDAS by Dr. Susan Swedo, who led the NIMH team that was first to identify this new subtype of pediatric OCD and and our latest webinar Systemic Inflammatory & Autoimmune Diseases—PANS  by Jennifer Frankovich, MD, MS.

Dr. Swedo describes comorbidities as a rule, rather than the exception, in children with PANDAS. Common Comorbidities include:

  • Sleep disorders (80%)
  • Behavioral regression (98%)
  • Inability to concentrate (90%)
  • Handwriting deterioration (90%)
  • Urinary frequency, urgency, enuresis (90%)

Only about 10% have hallucinations, and about 20% have eating disorders. More common comorbidities include short-term memory loss, hyperactivity, aggressiveness, learning difficulties, and sensory hypersensitivity.

How PANS/PANDAS is diagnosed

Diagnosis of PANS/PANDAS is based on the consensus statement from the PANS Consensus Conference, published in the Journal of Child and Adolescent Psychopharmacology in 2015. PANS/PANDAS requires a differential diagnosis, meaning that the symptoms cannot be better caused by another known medical or neurological disorder. Other diagnoses might include:

  • Lupus
  • Steroid responsive encephalitis
  • Multiple sclerosis
  • Guillain Barre syndrome
  • A different form of Autoimmune encephalitis
  • Other disorders

Before diagnosing PANDAS, a physician may order laboratory testing, EEG and MRI scans, or a sleep study. They will likely take a comprehensive family history (paying special attention to genetic factors and exposure to strep), perform a physical examination, and look for involuntary movements and dilation of the pupils. If the onset is recent, the clinician may also take a throat culture to identify the presence of a strep infection. Remember that PANDAS can only be diagnosed if the symptoms cannot be explained by another disorder. Clinicians should seek to rule out other illnesses first.

How is it treated

Clinicians generally take a three-prong approach to treating PANDAS.  

1. Treating and preventing infections: If the child has a bacterial infection, treating this infection can reduce symptoms and improve outcomes, especially during the first weeks or months of illness. In this case, a physician may prescribe 3 to 4 weeks of narrow-spectrum antibiotics.

2. Addressing immune system dysfunction: Immunomodulatory therapies to address immune system dysfunction may include NSAID’s Oral or IV steroids, intravenous immunoglobulin (IVIG), therapeutic plasmapheresis, and others indicated by severity. These are only useful in conjunction with infection treatment and psychiatric and behavioral interventions.

If a child has OCD but does not have PANS/PANDAS, there is no reason to pursue a long-term immune treatment. In a study by Nicolson et al, JAACAP 2000, children with OCD but without PANS/PANDAS saw no significant improvement from therapeutic plasma exchange. These therapies are expensive and intensive. Other studies have shown similar results.

3. Applying Behavioral and Psychiatric Interventions: Behavioral and psychiatric Interventions may include SSRI’s Anxiolytics, Soporifics, other typical psychiatric medications, and cognitive behavior therapy. When choosing a therapist, Dr. Swedo suggests looking for an expert in OCD treatment:

“If I had my choice between a therapist who had a lot of experience treating children or one who had a lot of experience treating OCD in adults, I would actually go for the treatment of OCD in adults because treatment of OCD in children is identical to that has been found to be effective for adult patients with obsessive-compulsive disorder,” she said.

Supportive therapy can help parents understand the course of illness and treatment. Getting parents into CBT even before the child is ready can be very helpful.

Treatments should be administered by a licensed and qualified healthcare provider. If you suspect your child may have PANS or PANDAS, consult your primary care physician.

In very rare cases, a child with autism may also qualify for a diagnosis of PANS/PANDAS. For a deeper look at the latest PANS/PANDAS research, view the webinar presented by Susan Swedo, M.D. and our latest webinar Systemic Inflammatory & Autoimmune Diseases—PANS  by Jennifer Frankovich, MD, MS.

For more information, visit the PANDAS Physicians Network.

ARI thanks Sue Swedo, MD, for her contributions to this article. 

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