We’re grateful that the scientific research related to PANDAS & PANS is finally getting proper exposure.
Download them NOW! Articles include papers on IVIG, Plasmapheresis, and more. These tools can be useful at medical appointments and insurance purposes.
Click here for the full list:
Positive treatment outcomes and more are the focus of the new research posted online for the highly anticipated Journal of Child and Adolescent Psychopharmacology special edition!
The online pieces are available as abstract only and will accompany previously released online articles , including the groundbreaking Consensus Paper. If you ordered the Special Edition JCAP, you will receive the full versions in your copy once it is published in late February.
PREVIOUSLY PUBLISHED ARTICLES
The following are previously released articles that will also appear in the upcoming Special Edition JCAP.
- Clinical Evaluation of Youth with PANS: Recommendations from 2013 PANS Consensus-K. Chang et al
- Characterization of PANS Phenotype- T. Murphy et al
- Cefdinir for Recent Onset Pediatric Neuropsychiatic Disorders: A Pilot Randomized Trial- T.Murphy et al
- Disordered Eating and Food Restrictions in Children with PANDAS/PANS- M.D. Toufexis et al
- PANDAS and Comorbid Klein-Levin Syndrome- D.M. Gerardi et al
I am a mother of a child that had “classic” PANDAS symptoms during a time when there was very little know of the Pediatric Autoimmune Neuropsychiatric Disorder Associated w/ Strep. I am a registered nurse, mother of three (my youngest, Laura, having PANDAS) and I can vividly remember the perplexing nursery school illness ( later diagnosed as strep) that “set her up” for the PANDAS onset Storm – we experienced approximately 6 months later.
Desperate, my research at the local library helped me find “Is it “Just a PHASE?” by SWEDO & LEONARD – The chapter on PANDAS was validation to me that I WAS NOT CRAZY because by then I thought I was. We went to pediatrician (again) and I begged/demanded a strep test on her slightly red throat which came back positive! Her PANDAS onset was shortly after her 3rd birthday. We dealt with PANDAS on and off throughout her elementary school years and even today it is very difficult to think of the dark days and difficult weeks this perplexing disorder robbed her and our family of.
Laura, is NOW 19 years old.
I am happy to report, Laura is currently in her second year of college, living on campus, at a 4 year University (3 ½ hours away from home). She experiencing and enjoying everything that any 19 year old college student would. High school years were a blast, proms, socials, cheerleading, driver’s license, retreats and college visits. She also dealt appropriately with the high school “Drama” that comes with being a teen. I knew by middle school we were coming out of the woods as she began to enjoy sleepovers, going to birthday parties, even vacationing away from home with a friend.
Ten years prior, my only hopes and prayers were that she would be able to have a healthy life with peace of mind.
If this gives hope or strength to one parent – My objective has been met.
*photo provided by flickr creative commons by Stan
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.
Welcome and Opening, West Coast PANDAS/PANS Symposium April 2014
PANDAS, PANS and Beyond…
Dr Susan E Swedo
“The Brain, the Immune System and Encephalopathy”
Dr. Melanie Burgos-Alarcio, Pediatric Neurologist, Leading PANDAS/PANS Physician
“PANDAS/PANS What Are The Questions?”
Dr. Michael Cooperstock, Chief, Division of Infectious Diseases and Rheumatology
Department of Child Health, Columbia, MO
“Think Outside the Box”
Amy Smith, Nurse Practitioner, Integrative Medicine, Director PANS Program,
Hill Park Medical Center, Board Member PANDAS Network
Teresa Gallo, Parent, West Coast PANDAS/PANS Symposium April 2014
Click here to visit our Video Library!
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
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:
Read summary and highlight of the PANDAS/PANS Symposium at the PANDAS Network website in the upcoming weeks.
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.
Click to be brought to the presentation.
- 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.
- 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.
- 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)
- 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.
- TH17 immune cells is a normal immune response. If interrupted, erroneous events occur
- 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
- 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?
- 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.
Current Retrospective Survey Being Conducted
- 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
- The above thesis studied the impact of PANS exacerbations on all aspect of daily life.
- 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
- 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
- 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
- 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.
- 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.
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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
- 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.
Donate to Dr. Agalliu’s Lab: UC Irvine Research (includes information on lab)
This survey is closed. Thank you for participating!
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
by Karen J.
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!