Symposium Presentation Videos Now Online

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PANDAS Network is happy to share presentations from the West Coast PANDAS/PANS Symposium!

These videos are available for free and can be viewed below or found at youtube.com/pandasnetworkvideos. Links to these informative presentations will also be permanently housed on the PANDAS Network website.

Thank you to the providers, researchers, and parents that appeared at the Symposium and to those who agreed to make their presentations available to the public. These videos are such a valuable sources of information.

 

 

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Welcome and Opening, West Coast PANDAS/PANS Symposium April 2014

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PANDAS, PANS and Beyond…
Dr Susan E Swedo

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“The Brain, the Immune System and Encephalopathy”
Dr. Melanie Burgos-Alarcio, Pediatric Neurologist, Leading PANDAS/PANS Physician

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“PANDAS/PANS What Are The Questions?”
Dr. Michael Cooperstock, Chief, Division of Infectious Diseases and Rheumatology
Department of Child Health, Columbia, MO

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“Think Outside the Box”
Amy Smith, Nurse Practitioner, Integrative Medicine, Director PANS Program,
Hill Park Medical Center, Board Member PANDAS Network

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Teresa Gallo, Parent, West Coast PANDAS/PANS Symposium April 2014

 

 

Interested in watching more informative videos?
Click here to visit our Video Library!

 

PANDAS/PANS Symposium Highlights

photos (2)Thank you all parents, professionals and speakers for making the West Coast PANDAS/PANS Conference a success! Our goal was to advance NEW perspectives on this illness and bring some optimistic view for the future.

Videos of the presentations are now available on PANDAS Network! Special thanks to Christine Mitsogiorgakis  and others for their donation of professional filming and editing services. Please see below for a list of available presentations.

The conference was kept to a modest size (200 people) in order to allow for dialogue in the afternoon. Drs. Swedo, Frankovich, Alarcio, Cooperstock, and Amy Smith, NP who graciously spoke with 30+ medical practitioners in a three hour Provider Breakout Session.

For parents, we tried the first-ever therapeutic sessions with two remarkable Child Psychiatrists, Drs. Thienemann and Fier. Fier eloquently (and with some hilarity! ) revealed all the facets of our family lives and personal identity shifts when this illness plays out in our children. It was difficult to hear our sorrows laid out as a group but he led us back to the strength and healing we have achieved as parents. Thienemann’s warmly shared concrete coping skills with parents on how to handle OCD, rigid thinking, and anger that often comes with PANDAS. Our only regret was that both of these doctors could not speak longer.

The afternoon sessions were a NEW TWIST on PANDAS/PANS discussions – Dr. Jamie Candelaria-Greene explained school accommodations; parent advocates, Wendy Nawara (IL) and Paul G. Ryan (AZ) – explained how they will help us lead our FALL CAMPAIGN for October 9th Awareness Day activities and activism efforts with our State Legislators.

One of the best parts of the conference were stories of healing from parents and children themselves. We also had a child resolved from PANDAS play in a cello quartet during lunch hour!

 

West Coast PANDAS/PANS Symposium Presentations

 

Opening Swedo Alarcio Cooperstock Smith Panel Discussion Gallo

PANDAS Conference Highlighted in Media!

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PANDAS Network hosted the West Coast PANDAS/PANS Symposium yesterday, April 26, 2014. The Inside Bay Area News highlights the event in, Parents, doctors share hellish experiences of PANS/PANDAS disease, often misdiagnosed as bipolar disorder.

 

Parents from 16 states and four countries, including China and Scotland, made the pilgrimage to the conference sponsored by the PANDAS Network, a parent support group.

“You’re way ahead here,” said Grant Timothy, who traveled with his wife, Gillian, from Scotland to learn more about the disease they believe their 8-year-old son is suffering from. “We went through 12 doctors. My wife and I long suspected he had to have an immune problem. The doctors refused even a simple blood test.”

Last November, they flew to New York, where the boy tested positive for a multitude of infections that his parents believe caused his problems, including Tourette syndrome. But in the United Kingdom, Timothy said, no doctor will write a prescription for a prolonged dose of antibiotics.

“The UK just won’t give it,” he said. “It’s now almost May, and there’s been no treatment.”

Many gathered at the weekend conference don’t think awareness is much better in most of the United States.

Jim and Jill Kemp, of Eureka, said they’ve lived through two decades of misdiagnoses for their daughter, Amanda.

“After 20 years, everything we were told was wrong. They gave her 37 medications that weren’t doing anything,” Jim Kemp said.

“It’s been a try and fail my whole life,” said Amanda Kemp, 20, who attended the conference with her parents. “I have treatments now that will hopefully work. If they don’t, I might as well give up.”

Her mother is more optimistic.

“I feel elated here,” Jill Kemp said. “There’s hope, especially because people here put their necks out.”

To read the article in full, please visit:

http://www.insidebayarea.com/news/ci_25646086/parents-doctors-share-hellish-experiences-pans-pandas-disease

Read summary and highlight of the PANDAS/PANS Symposium at the PANDAS Network website in the upcoming weeks.

NE Conference Highlights

PANDAS Network Table

 UPDATED 12/9/2013 to include additional notes.

November 9 and 10 proved to be a well informed and uniting day for parents, researchers, and physicians. With over 400 people in attendance, this was the largest conference solely devoted to PANDAS and PANS. Thank you to the NE PANS/PANDAS Parents Association for their great work and to all those that presented and attended.

Below, you will find links to some of the presentations along with a compilation of notes taken by various people. Thank you to Vickie and Chrissy D.

 

Presentation Slides

Click to be brought to the presentation.

Swedo pdf 1

PDF #1 : http://tinyurl.com/swedopart1
PDF #2: http://tinyurl.com/swedopart2

Chapman pdfMicco pdf

 

 

 

Bock pdf


PDF #1: http://tinyurl.com/BockPANS1
PDF #2:http://tinyurl.com/BockPANS2

Hubbuch pdf

 

 

 

Presentation Highlights

Audience 2

 

Dr. Susan Swedo

General Information

  • It may be more appropriate to refer to PANDAS as a “misdirected immune response”.
  • If you cannot remember the onset, there is a chance it is not PANDAS.
  • Not all kids with OCD and tics have PANDAS
  • PANDAS may be created by the following: Strep > genetic susceptibility > misdirected immune response
  • An example of a case where on an MRI, the caudate size was less inflamed post treatment (by 20%)
  • Rule our Rheumatic Fever
  • Test for ANA (antinuclear antibodies)
  • SSRI- start low. 1/20 of the regular dose may be indicated for initial dosing
  • Affirm to children that only 1% of their brain is affected. The other 99% is healthy and working to help you heal.
  • Sleep studies are in the works
  • EEG may be something to look into with sleep abnormalities and may get you treatment.

Sydenham’s Chorea (SC)

  • 75% of kids with chorea have OCD
  • SC is a rule out for PANDAS. If you suspect PANDAS or cannot get a diagnosis, rule out the possibility of SC.
  • If you are able to get a diagnosis of SC, you will get a treatment plan.
  • Physicians need to taught the difference between chorea and choreiform movements.

Symptoms

  • PANDAS and PANS is not only OCD. Must have other symptoms present.
  • 80% of kids have urinary frequency. Make sure to mention this at pediatrician’s office. This will lead to testing including UTI. It may get a documented infection and treatment.

Strep

  • Don’t chase titers. Even with a treated infection, titers will naturally rise for a bit
  • 65% of kids will get strep during the school year.
  • You can test positive without classic symptoms. Stomach ache and headache can be the only symptoms of strep you get.
  • Strep is not the only trigger (PITAND)

PANS

  • H1N1 outbreak greatly increased number of PITAND cases
  • When developing PANS criteria, wanted to include post puberty individuals.
  • Restrictive eating – not necessarily anorexia, but some just cannot swallow. Feels odd. Swallowing study may be indicated.

 

Dr. Dritan Agalliu

General

  • TH17 immune cells is a normal immune response. If interrupted, erroneous events occur

Strep

  • Streptococcal specific immune cell entry introduced via the CNS is an unusual route
  • Subset of strep strains can become erroneous and create reactions
  • 20-30% of kids with RF will develop SC.

Blood Brain Barrier

  • How do antibodies get access to the brain?
  • The Blood Brain Barrier (BBB) is a physical barrier
  • BBB breakdown is known to occur in stroke, Acute Traumatic Brain Injury, brain infections, and autoimmune disease such as PANDAS and PANS.
  • Junctions that protect the brain can be damaged and destroyed

Collaboration with Dr. Pat Cleary

  • Researching the immune response to intranasal infection in mice.
  • Mice became sick with classic symptoms, but then resolved
  • After 3rd or 4th infection, classic symptoms no longer appeared
  • Repeated intranasal infections induced IL-17 immune t-cells in NALT (Nasopharynx-Associated Lymphoid Tissue). Side note: the IL-17 family has been linked to many immune/autoimmune related diseases

Research observations

  • T-cells were found in the brains of the mice. They did not know if that would actually occur.
  • OLFACTORY BULB part of the brain was most affected by the t-cells
  • Biocytin tracer was used to measure the defects of the BBB permeability.
  • Largest are affected was the area that controls a sense of fear.
  • To see what BBB damage occurred, looked for antibodies that were normally present—-they found auto-antibodies.
  • The bacterium itself (strep) was NOT found in the brain.
  • T-cells were present in the brain of the MOUSE for 58 days. In the life of a mouse, that is considered long term. What would that translate into human?
  • T-cells may stay in the brain and be reactivated with other infections.
  • T-cells start in the olfactory bulb and migrate
  • What are the long term side effects of a leaky BBB? Will the BBB remain susceptible?

 

Dr. Beth Latimer
  • Has seen over 2,500 patient with PANDAS
  • PANDAS is a tragedy due to lack of recognition
  • Has seen a few kids from IVIG study due to relapse from reinfection
  • When tics are the main symptoms, may be categorized as a “PANDAS variety” due to new diagnosing criteria.
  • Dr. Latimer shared numerous case studies during her presentation to show the varying forms of presentation and the spectrum of the disorder
  • General observation/question asked…Is PANDAS an early presentation of Autoimmune Encephalitis?
  • We need to look at why urinary frequency occurs in so many children.
  • Referred to the Rey-Osterrieth Complex Figure Test and how numerous PANDAS children fail this test. See the following paper for more information: http://neuro.psychiatryonline.org/article.aspx?articleid=181293
  • This does not appear to be the same strep that causes RF
  • IgG range tends to be lower part of normal
  • Low Vitamin D has been associated with autoimmune disease. Get Vitamin D levels checked – do this before giving supplements and at times throughout the year as levels will change with seasons.
  • If giving steroids, morning dosing is preferred, no later than 3pm. This will decrease the chance of affecting sleep.
  • Flonase observation: Is it really a good idea to suppress the immune system in the nasopharynx?
  • Gut flora: There is something different about the guts of PANDAS kids. They tend to be able to tolerate long term antibiotics very well even if not taking a probiotic.
  • Would not recommend naproxen sodium as a NSAID…way too rough on stomach.

 

Dr. Jan Tona

Current Retrospective Survey Being Conducted

  • http://pandasnetwork.org/survey/
  • 410 enrolled to date – minimum 500 wanted. May remain open until end of 2013.
  • Future research can collaborate and access the respondents for possible participation in future studies.

Past Research at Univ. of Buffalo

 

Dr. Kyle Williams
  • Spoke a bit on YALE-NIMH IVIG study
  • Primary outcome measurement was decrease in CY-BOCS a standardized tool to measure OCD severity
  • Double blind placebo controlled study; different researchers screening, present during infusion and doing post-analysis to blind reviewers
  • MRI pre/post treatment
  • Autoimmune antibody analysis pre/post treatment (Cunningham)
  • Inflammatory cytokine analysis pre/post treatment
  • Serum and CSF t-cell profile
  • Screened 1100 children with 37 participants—18 IVIG 17 placebo
  • In the analysis phase of trial and hope to be completed soon

 

Dr. Rosario Trifiletti
  • Narrow definition of PANS/PANDAS good for research but not in clinical practice. You don’t want to leave anybody out you could help.
  • ‘No child left behind’
  • Reviewed his different age stratifications of PANS and what you might see at different stages (‘autism, PDD, Swedo Syndrome, Kovacevic Syndrome, LeRoy Syndrome, Excorcist Syndrome’)
  • Touched upon his genetic testing  and emerging patterns/clusters of defects seen in PANS
  • Touched upon his alternate fever response and histamine dysfunction but didn’t have enough time for details

 

Dr. Kenneth Bock
  • Talked on integrative approach to neuro-immune disorders/PANS/PANDAS
  • Discussed Immune Balance – a balanced cellular and humoral response
  • Importance of gut health in immune disorders—75% of immune cells found in the gut
  • Important to deal with the underlying factors that contribute to recurrent infections/autoimmunity and chronic inflammation
    • Toxins/heavy metals
    • GI issues: dysbiosis/intestinal hyper-permeability/food allergies and sensitivity
    • Environmental allergies and sensitivities
    • Nutritional imbalances and deficiency
    • Hormonal and immunological imbalances
  • FIRST TACKS law – “if you are sitting on a tack; it takes a lot of Risperdal to make it feel better. The appropriate treatment for tack sitting is tack removal.”
  • SECOND TACKS law—“if you are sitting on two tacks, removing one does not produce a 50% improvement. Chronic illness is, or becomes multifactorial.” Adapted Sidney Baker
  • Talked on the immune threshold – illustration of a kettle with layers influencing immunity—genetic predisposition, nutritional deficiencies, allergies and sensitivities; environmental toxins, psychosocial stress etc. Then showed adding infectious agents and kettle spilling over due to immune imbalance.
    • Discussed dietary modification as anti-inflammatory therapy
    • Mentioned caution w/ NSAIDS as contributes to leaky gut
    • “Leaky gut leaky brain” was his takeaway lesson
  • Treatments (in addition to traditional therapies):
    • Treatment w/ Omega 3 fatty acids to decrease inflammation
    • Curcumin
    • methylB12 – neuroprotective effect and enhances methylation
    • vitamin D3 –and immunoregulative function
    • probiotics & prebiotics
    • exercise/ tai chi
    • talked on Candida/yeast—how a big trigger for many of our kids; leading to dysbiosis; importance of yeast’s  role in dysregulation of immune response.

 

Dr. Jolan Walter—MASS General Hospital
  • Will be part of team at new Mass General – she is allergist/immunologist
  • Neurobehavioral and immunology clinic (not calling it a PANDAS clinic)
  • Treating with IVIG – sometimes multiple doses—replacement dose is 0.5gm/kg; anti-inflammatory dose 1.5/2gm/kg
  • Over 50% of IVIG products use is off label in medicine
  • Using Rituximab for refractory cases—it targets B cells—is also used in RA and autoimmune disorders (off label) – not used in “typical cases”, very extreme and difficult to heal cases.

 

Dr. Jamie Micco
  • Talked about the use of CBT (cognitive behavioral therapy) in PANDAS OCD
  • Families may unwittingly provide excessive accommodation and reassurance for child’s compulsions and rituals, which feeds into behavior
  • Cognitive training—think of obsessions as ‘spam messages’
  • Developing fear and avoidance hierarchies and working through situations from least amount of fear to most fearful (ex. Start by exposing child to least fearful situation and work up)
  • Not much research on CBT for PANDAS subtype of OCD—only Dr. Storch
  • Don’t embark upon CBT at the height of symptom exacerbation, b/c children may be too dysregulated
  • Booster sessions important for PANDAS children, given their risk for relapse

 

Peggy Chapman, CNS
  • Talked on psychiatric management and behavioral interventions in children with PANS
  • Slides explain in detail her talk—she started on how to explain PANS to your child
  • Recommended naming your PANS—give it a name, code word
  • Ride out the flares—scary but they usually only last a week
  • Behavioral interventions
  • Anxiety attack—in PANS it’s neurological—reasoning doesn’t work in the heat of the moment
  • PANS children with OCD usually cannot talk about or describe their OCD in office, unlike traditional OCD
  • Helpful maneuvers—empathy, normalizing, validating & making manageable
  • Total meltdown attack—stay calm & reassuring; don’t try to fix problem with minimal conversation; stay with kid but not too close
  • OCD—not becoming an unwitting accomplice
  • Rule of 3: participate 3 times then you’re out; time rules to re-engage in OCD again
  • Readiness for CBT—need to be stabilized first
  • Tics—if you bring attention to the tic there will be an increase
  • “tics can be suppressed but not denied”
  • Reviewed neurotransmitters and then went through different classes and names of drugs that might be used

 

Dr Jeanne Hubbuch
  • Ticks carry multiple infections – nature’s ‘dirty needle’
  • Lyme disease must include borrelia and co-infections
  • Lyme can occur any time of year, and in any region of the US and Canada
  • Transmission can occur within 4 hours—no safe time of attachment
  • PREVENTION—spray yard with permethrin; cut down shrubbery; low grass; clear under trees; body checks; DEET (not infants); oil of lemon and eucalyptus
  • Tick tubes (Damminix) can decrease larvae/tick population
  • To send away ticks and test for disease  http://www.tickdiseases.org/
  • Ticks also carry anaplasma, ehrlichea; babesia, bartonella, mycop, viruses

Diagnosis

  • Lyme Disease is a clinical diagnosis
  • Early diagnosis—tick bite and symptoms
  • EM rash is definitive with or without tick or labs
  • Lyme disease is great imitator
  • All organs can be affected and symptoms often vague

CDC testing

  • Elisa 50% false negative
  • Western Blot—CDC def 2 IgM bands/5 IgG bands
  • Band 41—non-specific
  • Lyme specific bands—18, 23, 31, 34, 39, 83-93
  • Igenex tests all bands including 31 and 34
  • Advanced Lab at 16 weeks 94% accurate but only one peer-reviewed article to support
  • CD57 test—more accurate for adults; sign of chronic disease; lower result sicker person

Treatment

  • Early—4 weeks; amoxi; ceftin; doxy if >8 years old
  • 30% can have neg western blot
  • Biofilms can make treatment difficult
  • Co-infections – sicker
  • Antibiotics—cell wall agents; intracellular agents; cyst and biofilm agents; often used together

Co-infections

  • Testing even less accurate
  • Bartonella—more CNS than skeletal S/S
    • Gi upset
    • Gradual onset
    • Can cause rages
    • Responds to Azithro; Sulfa Rifampin; fluroquinolones (cipro; levaquin)
  • Babesia—abrupt onset—night sweats
    • Cycles every few days
    • Fatigue; headache; chills
    • Cough; palpitations
    • Responds to antimalarials: Mepron; Azithro; Clinda Sulfa
  • Ehrlichea/Anaplasma
    • Can have high fever
    • Knife like headache; sore muscles
    • Responds to Doxy; fluroquinolones; rifampin
  • Mycoplasma Pneumo
    • Difficult to treat; sickest patients; major fatigue; neuro s/s

 

Dr. Charles Jones
  • Talked on infection-induced autoimmune encephalitis (Lyme-induced)
  • Few case studies; video of recovered child
  • Bands 31 and 34 increased incidence of autoimmune sequalae
  • Triggers for anti-neuronal antibodies are Strep; MycoP; Lyme and co-infections
  • Treatment—eradicate underlying infection with antibiotic and if necessary IVIG
  • IVIG — Replacement therapy vs. modulating therapy
  • Lower dose of IVIG can sometimes make it worse – t cells stimulate b cells to make more anti neuronal antibodies, causing increase in encephalitic process
  • Success—eradicating the infection and reversing the autoimmune process
  • If an immunization contains a component of an organism in our genome, we make antibodies to this infectious agent and we make antibodies to ourselves.

 

 

Related posts:

NE PANS/PANDAS Conference in Review By Diana Pohlman, Executive Director

Donate to Dr. Agalliu’s Lab: UC Irvine Research (includes information on lab)

Donate to Dr. Cunningham’s Lab: University of Oklahoma Research

Online Research Study Now Active: “Retrospective” Survey

This survey is closed. Thank you for participating!

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PANDAS-PANS-PITAND Retrospective Research Study Invitation
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You are invited to participate in an online survey research study from the University at Buffalo in collaboration with Dr. Tanya Murphy from the University of South Florida to learn more about the symptoms, diagnosis, interventions, and clinical course of children with PANS including PANDAS and PITAND.

Participants in this study can elect to remain anonymous or they can elect to have their name and /or their child’s information entered into a registry for future research.

 

My Son, the PANDAS Survivor

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My Son, the PANDAS Survivor
by Karen J.

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Today, my son not only graduated from high school, but he gave a commencement speech to over 2,000 people. While this might not be considered too out of the ordinary, for the parents of a kid who once suffered severe vocal tics and OCD due to PANDAS, today was nothing short of a miracle.

In September 2001, my 1st grader’s life changed. Almost overnight he developed OCD including “bad thoughts” about a multitude of disturbing things and extreme eye-blinking tics. My husband and I immediately sought the help of a child psychologist, fearing that our son had been molested or experienced some other frightening circumstance that would precipitate his behavior. Although the diagnosis of OCD was made immediately, the cause of his abrupt symptoms would go unanswered for another six, agonizing years. Over a short time his eye blinking turned to vocal tics, shouting outbursts several time a minute when his tics were particularly exacerbated. There were days and weeks that he was unable to go to school, as the stress was just too much and the tics were too invasive. He was diagnosed with Tourette’s syndrome and placed on medications, including Buspar, Risperdal, and fluvoxamine in order to control the tics, anxiety, and OCD.

During this time, as a mother on a mission, I searched for understanding. How did my very normal, intelligent son become so suddenly plagued? Early on I discovered information on PANDAS, but doctors in Madison, Wisconsin, had never heard of such a thing. Although our family physician was very open to the idea, he was ill-equipped to handle such an oddity. Our family is fortunate to live in an area with excellent health care; however, area neurologists refused to see my son, stating that Tourette’s syndrome is a mental illness, not a neurological one. Desperate to find a cause, my son saw a renowned pediatric allergist who only counseled me on accepting the fact that my son would never get better.

Our child psychiatrist was a caring and wonderful woman who did not immediately embrace the PANDAS idea, but was open enough to our hunches. At that time, she reported to us that the psychiatric profession discounted PANDAS as a viable cause for childhood OCD and tic disorder. Still, we pressed on. I accepted my son 100 percent, but not his diagnosis—a mother knows, she just does. In the end, our child psychiatrist played an instrumental role in the PANDAS diagnosis, ordering tests that other physicians would not; she became our advocate.

Six years of debilitating tics brought both my husband and I down to our knees, quite literally. Praying for guidance, we were led to Dr. M. Kovacevic in the Chicago area who offered long-term hope (dare I say cure) for our son. We found Dr. Kovacevic was easily accessible and treated our case with the urgency that that my husband and I felt. My son’s initial blood titer and a trial of steroids verified what I always knew in my heart—my son was having a physical reaction in his brain to cause his symptoms. In July 2007, my son had a life-changing IVIG treatment. It was so simple, yet so effective!

Today, my son is a performer. He is known in the community for his ability to play jazz on his saxophone and to stand in a silent, crowded gymnasium playing the National Anthem. He is planning a career as a saxophone performer and a music educator. One would never know the grueling six years prior to 2007 looking at him now.

Today, MY son gave a commencement speech!

My son, PANDAS survivor

My son, PANDAS survivor

Treatment and Relapse Survey Results, NORD, and more!

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Treatment and Relapse Survey Results, NORD, and more! December 2012 newsletter is now available! Click here to access information on survey results, NORD, IVIG study, Autoimmune encephalitis paper by Dr. Finn Somnier, Thank you, Johnny, and Support Group Central.

If you’d like to receive future newsletters right to your inbox, sign up on the left side of our website under “Join Our Network”.

12/08/12: new, updated version of “Autoimmune Encephalitis” can be found here:

http://pandasnetwork.org/wp-content/uploads/2012/12/Autoimmune-encephalitis.pdf

 


IOCDF Conference: Parent Summary #1

The following is one of two parent summaries of the 2012 IOCDF Conference. We advise the reader to view both summaries as there are some overlaps, but also unique observations in both. Parent Summary #2 can be found here.

 

Parent Summary #1 (by parent volunteer, Vickie)


The IOCDF conference was held July 27-29th in Chicago. PANDAS and PANS played a prominent role in this year’s conference with a PANDAS Network.org exhibit table, 6 presentations devoted to PANDAS (these were divided into 3 blocks), an evening Q and A with leading researchers and clinicians, and a Saturday morning brainstorming session with prominent figures of the IOCDF and a variety of PANDAS and PANS parents. I am happy to say that Dr. Swedo’s presentation had amazing attendance and was a full house with people sitting on the floor due to no available seats!

The following are notes taken by a PANDAS Network.org PARENT volunteer. Because of the overwhelming amount of information that was being given during the presentations, I am providing the information in basic, outline form. If you attended the conference and see any errors, please email us at pandasnetwork@gmail.com. Please remember that these notes are as understood by the volunteer and not all information given may have not been noted. There is new information that has not been heard before in the summaries along with a few upcoming studies.

 

Click on the presenter/event to be taken to the summary:

Parent Presentation
Dr. Latimer
Dr. Swedo
Dr. Murphy
Dr. Storch
Evening Q and A
Saturday Parent Brainstorming Session

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Parent Presentation

This was a first had account of how PANDAS presented in a 5 year old and how multiple exacerbations affected him. Support and advocacy was also discussed.

Excerpt from presentation:

My son ended up experiencing 3 strep triggered exacerbations within one year. All had a documented, asymptomatic strep infection. Because of follow up strep tests that were performed each time, we know each exacerbation was caused by a new infection. Pretty much when a tell tale meltdown occurred, I would know IT was back. We would have him tested for strep within hours. His rapid strep tests started coming back positive and he would be put on antibiotics (doctors refused to give him prophylactics at that time).

What I think is important to note is each exacerbation was different. OCD was definitely a common thread and I would say the most prominent symptom. But each symptom, the severity, and the duration of the exacerbation varied. Parents and physicians can’t assume they know what to expect or think they can fix new episodes quickly now that they know it is PANDAS or PANS. This is why it is important to be pro-active and extremely vigilant. We must prevent additional assaults on a child’s brain BEFORE it occurs.

Even with being given antibiotics within 12 hours of onset in subsequent exacerbations, Mark still experienced his darkest moments. For him, early intervention may have helped overall recovery, but it did not stop PANDAS in its tracks.

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Dr. Latimer

This section will be added to shortly.
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Dr. Swedo Presentation #1 and #2

 Dr. Swedo Presentation #1

PANS

  • Hierarchy of the three disorders was discussed along with an overview of the disorder.
  • PANS includes both children and young adults.
  • The non-infectious triggers associated with PANS have yet to be determined.
  • Uptic in cases during the 2010 H1N1 epidemic is a prime example of a non-strep trigger.
  • Background studies were noted such as the 1894 Osler study in which perverseness of behavior in choreic children were noted.
  • All the acronymns (PANS, PITAND, PANDAS) are characterized by acute onset.
  • PANS can be diagnosed with the first onset.
  • With PANDAS on the scene, people started to forget about PITAND and that it can be more than strep.
  • NIMH meeting that led to PANS…Kulan held up the publishing of the PANS paper for a year, then published his CANS paper
  • The controversy surrounding all of this is not over.
  • PANS isn’t just OCD. At this point, Swedo listed other possible symptoms.
  • PANS criteria was covered and explained as listed in the PANS paper.
  • FOUDROYANT is a perfect way to explain the onset of PANS. Meaning: Lightening.

 

PANDAS

  • Swedo regrets ever coining the disorder “PANDAS”.
  • Brief history of the disorder was given along with it’s “roots”.
  • Chorea is never the same each time. If the movements are the same, then it may be OCD.
  • A MOM was the first to discover the connection between strep and OCD/tics. Her child was the first documented PANDAS child. Swedo reinforces that physicians should listen to what the mother’s have to say!
  • Average age of onset is now LOWER than what the original paper cites. This may be because kids are now being exposed at a younger age. Mainly due to being sent to day care at younger ages and starting preschool at a younger age.
  • By age 12, 98% of the population is immune to strep. The question Swedo puts forth is whether PANDAS is part of that remaining 2%
  • GAS infections occur in 65-70% of grade school aged children during the school year. Swedo noted that some of these infection may be due to strep carriers infecting others.
  • A normal titer is 440. HOWEVER, 440 is still high and still a positive titer. 440 is just the “new normal” because the average titer has gone up.
  • Carriers are uncommon, but can infect others.
  • Carriers do not have an immune reaction to strep. Therefore, since PANDAS kids HAVE an immune reaction to strep (PANDAS), they technically cannot be categorized as carriers, even if they are asymptomatic and test positive after a typical round of antibiotics.
  • YES, post puberty PANDAS can happen.
  • Neurological abnormalities (ie. handwriting changes) is an important aspect as it separates PANDAS from other possible disorders.
  • Chorea and choreic movements are different. Chorea is dramatic movements that makes it look similar to dancing (hence why it is also referenced as St. Vitus Dance). A choreic movement example is finger movements. When two hands are flat in front of you (not placed on anything) and fingers from both hands are touching , the person should be able to maintain a steadiness of the fingers. If the fingers cannot do this and “jump” around, that is an example of choreic  movements. Examples of the feet was also given.
  • Sydenham’s Chorea (SC) can lag behind a strep infection by 8-9 months AND that strep infection may not have been detected in the first place.
  • References to Dr. K’s work was addressed. Dr K. was one of the first to note the co-morbid symptoms of 108 patients with PANDAS. He sees more severe cases than the regular clinician.
  • Comparison to Rheumatic Fever was made.
  • PANDAS used the Rheumatic Fever (RF) model:
  • Dozens of strains can cause RF.
  • There is no documented case of RF that has been tracked from onset of strep infection to RF due to the lag time of diagnosing RF and how it usually associated with a undiagnosed strep infections.
  • Titers can lag behind infection 4-6 weeks.
  • Only 2/3 of infections can be detected by titers.
  • There has been no definitive antibiotic trial of antibiotics…until Dr. Murphy’s Azith study is complete.
  • The D8/17 clone that was helping with identification earlier on died.
  • Research into the genetic susceptibility of PANDAS kids would be good.
  • IMPORTANT: In PANDAS, the child’s “tolerance” for self is not gone. This is good. Immune tolerance prevents tissue damage. PANDAS is different than some other autoimmune diseases, like Rheumatoid Arthritis, in which the tissue surrounding the joints become eroded. Such a phenomenon does not happen with PANDAS. This is good!
  • Descendants of strep are part of Mycoplasma Pneumonia.
  • Swedo wants to know why is the inflammation occurs soley to the basal ganglia?
  • Dr. M. Cunningham’s work was discussed. No new information was given.
  • Dr. M. Hornig’s work was discussed. Dr. Hornig conducted a transfer antibody study. The production of symptoms by passive transfer.
  • PEX-Swedo noted that PEX is great as you can see the child get better while they are in hospital getting the treatment. PEX has also been shown to lessen the enlargement of the caudate.
  • “The use of prohlyaxis is very important”-direct quote from Dr. Swedo.
  • Current IVIG study only needs SEVEN more children to be competed.

 

PANDAS/PANS Eating Disorder

  • Classic anorexia is rare, but does occur with PANS.
  • The typical way eating issues surface with PANS (ie, contamination, fear of choking) can morph into classic anorexia.
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A Natural History Trial will start soon.

  • Clinicians will provide the information for this study. Clincians in the audience were told to be on alert for information of this trial.
  • Even though this was not elaborated on at the conference. We looked up what may be part of a Natural History Study. Natural History Studies MAY include such things as determining the true incidence of a disease, understanding the phenotypic variability of the disease, understanding the genotypic variability, and understanding the geographical variability.

 

Dr. Swedo’s Presentation #2

There was overlap of information between the two presentations. The following is the additional information that was shared during presentation #2

  • Strep throat, impetigo, and scarlet fever are the main causes of PANDAS.
  • If you are charting titers, anything short of a two fold increase is the same titer.
  • A swallowing study may be indicated in the future.
  • PANS kids can have involuntary muscle movements in the throat that makes it feel like they are choking.
  • Augmentin veracity is unknown (volunteer writing notes is unsure what Dr. Swedo meant by this)
  • Additional interventions may include: NSAID – Nonsteroidal anti-inflammatory drugs (Ibuprofen, aspirin, naproxen), Steroids, IVIG, PEX
  • Swedo proposed the question whether there is an increase in PANDAS due to parents not using aspirin anymore?
  • Long term treatment: Prophylactics such as Penicillin VK as per RF guidelines.
  • Under the PANS criteria, having a pre-existing diagnosis of OCD does not exclude a possible PANS diagnosis.

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Dr. Murphy

Treatment Directions

  • If abnormal ECHO, MRI, metabolic labs, paraneoplastic antibodies, then it is not PANS
  • Treatments may include: CBT, OT, EBT, Immune Therapies (antibiotics, IVIG-CNS autoimmunity dosing), and steroids
  • When treating with SSRI’s, low dosing may be needed. Sometimes a dose as low as 1/10 the typical dose.
  • Various forms of writing and handwriting sample were given. Dr. Murphy stressed these are highly intelligent kids with IQ’s as high as 160, yet during exacerbations their handwriting and other skills may become compromised.
  • Neurocognitive study results were reviewed.

 

My Child is Addicted to Augmentin

  • It may be because the clavulanic acid passes the Blood Brain Barrier.
  • There is a clavulanic acid  study that shows may help those with anxiety disorders.
  • Antibiotics may be doing more than fighting infections.
  • Benefit of beta lactams may be providing neuroprotection along with other benefits. This has been shown is ALS ( Amyotrophic Lateral Sclerosis) treatment as well.

 

Cefdinir Study Explained (Volunteer believes this study was active in 2010)

  • Participants were not necessarily PANDAS kids. New onset was the requirement.
  • Most PANS kids happened, by chance, to land in the placebo group.
  • Better tic response, than OCD response.
  • Many flared during illness despite being on antibiotics.
  • The study was mostly conducted during peak H1N1 season so this may have affected the participants.
  • 3 had “arms” for Mycoplasma Pneumonia.
  • 1 child was discovered to have Jeavons- a disorder in which the child looks to the sun or light.

 

New Azithromycin Study

  • Partial responders may be enrolled in upcoming CBT study.
  • Antibiotic study information cane be found here.

 

Other Things that May Help

  • Vitamin D (about a level of 50). You can have too much vitamin D so be watchful for dosing.
  • Omega 3’s
  • Probiotics (lactobacillus was specifically mentioned)

 

Other Information

  • Strep exposure can increase symptoms.
  • In an exacerbation, ideally 4 weeks minimum of antibiotics.
  • Tonsils: Do not pull soley because of the PANDAS diagnosis.

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Dr. Storch

Dr. Storch was kind enough to share his slides used for his presentation. He has also given permission to publicly post the. The slides can be found here.

 

CBT for PANS/PANDAS

  • ERP used to lessen severity of future exacerbations by providing tools for parents to use.
  • Baselines can shift due to having behaviors reinforced.
  • Need to know the right time to start therapy. If you can’t connect with the chld, it’s not time to start ERP.
  • Extinction Learningwas discussed as a tool.
  • Dr. Storch asked clinicians to publish more case reports.

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Evening Q and A

Please note that the volunteer writing the summaries was on the Q and A panel, so there was limitations to note taking. The majority of notes is being jotted down by memory. If others present at the conference see important omissions and would like to add or elaborate to this section, please email PANDAS Network.org at pandasnetwork@gmail.com. Thank you.

Q and A panel:

  • Dr. Susan Swedo
  • Dr. Tanya Murphy
  • Dr. Elizabeth Latimer
  • Dr. Eric Storch
  • Diana Pohlman (PANDAS Network.org)
  • Vickie Blavat (PANDAS Network.org)

Some Topics Asked and Discussed

  • Allergies: Dr. Swedo confirmed that allergies can be a trigger for children.  Parents should note that every child reacts different to medication and one should chart progress for at least two weeks after starting any new medication to truly see how the child tolerates it.
  • Tracking children: Diana Pohlman answered this question. She informed those in the audience that when a person signs up for the newsletter with PANDAS Network.org, they are taken to a short survey. Answering the questions is optional, but it provides some insight into the PANAS/PANS population. An epidemiological study will hopefully be in the future. PANDAS Network.org has such a survey in the works.
  • Dr. Swedo noted that over time the immune system should become less reactive to non-strep triggers. It takes awhile for the antibodies to stop circulating in the system.  The topic of anti-virals came up. Volunteer does not have many notes on this and welcomes feedback from others that were present.  Anti-virals can be useful, but one has to be sure that the anti-viral is correct for what the child is ill with (ie…don’t give an anti-viral for the flu, Tamiflu, unless the physician is positive it is the flu). Dr. Swedo said that PANDAS is a self-limiting disorder.
  • How do parents share information about their PANDAS child with others? Vickie Blavat answered this question. What has worked best for their family is telling neighborhood families that they have a child with an autoimmune disorder related to strep and 3 children who do not get symptoms with strep infections. So, if they can please let her know if any of children have strep. For the school, she has it on file with the prinicipal to be informed if strep is in any her kids’ classrooms. As for teachers, she briefly explains what PANDAS is and asks teachers to inform her if questionable behaviors arise as they may reinforce something she sees in the home and, in turn, have faster intervention. As for the children within the home…PANDAS son does not remember the exacerbations (he’s now 8). They explain to the children that the PANDAS son gets a “weird reaction to strep” and that’s why they are different than other families and do strep swabs more often than others. They have to be aware since younger daughter (age 6) will lie about having sore throats to avoid the question of strep being raised. A brief overview of OCD has been explained to the PANDAS child so he can hopefully have an active role if any signs of OCD surface….so he may recognize possible OCD and share that with the parents.

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Saturday Parent Brainstorming Session

This was a “parent only” meeting, meaning no doctors or researchers were present. The objective of this meeting was to answer these questions:

  • What have the parents seen?
  • How can these observations lead to future research?
  • What do we as parents feel would be beneficial research topics?

The following are brainstorming ideas that were given by parents. It does not mean research and/or funding will result from this. All ideas given, were noted.

Ideas Given by Parents Present

  • Genetic profiles of family histories. Perhaps using the genetic studies already geared towards OCD and then check any “red flags” in the PANDAS population.
  • Dr. Pat Cleary’s work on tonsil tissue samples must continue.
  • Dr. Dritan Agalliu BBB (Blood Brain Barrier) research.
  • A study noting what happens to the parents. How does the stress effect them (ie. PTSD).
  • A standardized list of tests needs to completed and the test results of such testing needs to be archived to find similarities and differences.  Also, cross check test results with symptomology. A casual “hands up” survey was taken at the table to see who had some certain tests.
  • Dr. Susan Schulman’s case histories need to be documented.
  • Studies like the current IVIG study needs to be duplicated with kids suffering more than 6 months. A timeframe of 3-5 years was mentioned.
  • Steroids (5 days vs. month long taper). What should one do and why?
  • Case reports on longer term cases and cases with longer follow ups are needed.

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PANDAS doesn’t deter boy’s acting dreams: The Nass Family

It is wonderful to read stories of how PANDAS children have the strength and perserverance to overcome the obstacles associated with disorder to live a full life and fulfill their dreams!

In “The Commecial Appeal” website, Garrett Nass is featured in the story “Disorder doesn’t deter boy’s acting dreams“. Garrett has PANDAS, and after treatment, is now pursuing his acting dream which includes his role in “The Ransom of Red Chief”.

To read the full story, please visit Disorder doesn’t deter boy’s acting dreams“.


11 Year Old Overcomes PANDAS to Accomplish Great Things: PANDAS in the News

11 year old Hayden Young is proof at the strength and determination kids with PANDAS have.

In the article, Craig James Congratulates Young Texan Who Overcame Autoimmune Disorder to Pitch Perfect Game, it took the Young Family 18 months of misdiagnoses to finally get to the true root cause of Hayden’s decline that consisted of many symptoms…PANDAS. After antibiotic treatments, things began to improve. His determination resulted in pitching a perfect baseball game a few weeks ago and being congratulated by Craig James, who is running for Texas US Senate!

This is an uplifting story that is perfect to share with any family or child living with the disorder. Let’s show our kids they can accomplish anything!

To read the full article, please visit Craig James Congratulates Young Texan Who Overcame Autoimmune Disorder to Pitch Perfect Game.