Following are my notes from the conference. You can also refer back to the Northeast PANDAS/PANS parents website for some of the slides. In some cases, I just wrote down information without comprehending it (i.e. when Dr. Cunningham was speaking--I would need another degree, I think, to totally follow her.) Dr. Trifiletti presented for parents although he can talk circles around all of us when he wants to. Dr. Bock also spoke to the parents and his presentation was easier for me to jot down although both he and Dr. T spoke scientifically as well.
According to Dr. T, PANDAS/PANS does not always have a clear onset (yay! I agree!) And strep is not the only trigger. Read the notes. I have enclosed links that I looked up. Any information given that is not clear or correct is my fault. I like taking notes by hand and sometimes I can't read my own hand-writing. Enjoy!
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Dr. Madeleine Cunningham, Co-founder and Chief Scientific Officer of Moleculera Labs
Identify potential antibody biomarkers
Infections are associated with brain and mental disorders
Molecular mimicry
Sharing of antigenic determinants between host and invading microorganism
Strep can affect the heart (carditis; results in murmer)
Strep can affect the joints (arthritis)
Strep can affect the brain (chorea)
Cerebral spinal fluid/ IgG penetrates into the brain
Antibodies are signaled through enzyme CamKinase
There is a very highly correlated dopamine release
Body is making too much dopamine
D2 receptor is an inhibitory receptor
Dopamine binds to the D2 receptor, causing inhibitory reponse
IgG antibodies from strep-immunized rats induced Cam Kinase and were absorbed with anti-IgG
Induced antibodies against D1 and D2 dopamine receptors
Brimberg studies (Israeli scientist): http://www.nature.com/npp/journal/v37/n9/full/npp201256a.html
Dr. Ben-Pazi (Jerusalem) conducted another study: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0073516
Open BBB due to infection or STRESS would allow antibodies to get into the brain.
Epinephrine can break through the BBB.
Do hormones, pubertal changes, seem to make a difference?
Peggy Chapman:
According to Dr. Jenike, 40-50% of adult OCD patients might have PANDAS (note: this is anecdotal.)
Does this run higher in gifted children? No evidence to that effect. PANDAS is in the autism population. Lots of autoimmune and gut issues and inflammatory issues in the autistic population.
Janice Tona, PhD, OTR, Univ of Buffalo:
Impact of PANS on daily functioning formal research study will be published.
To see a thesis with results: tinyurl.com/PANSOTfunction
Diana Pohlman: In Italy, they injected children with intramuscular penicillin. 49/65 children had full or partial remission.
Dr. Trifiletti, pediatric neurologist
Character of child has completely changed-this is the hallmark of PANDAS
There is a mental status change and emotional lability
Sir William Osler (1894) on chorea and Choreiform affections
The description of this matches PANDAS!
Dr. Trifiletti: the association of arthritis and chorea did not escape the physicians in the 19th century.
Dr. T: The heroes are our children and their arms because we draw a lot of blood.
The original Swedo criteria: motor/vocal tics and/or OCD (in the original version, it was OCD that was optional, now it is tics that are optional.)
A diagnosis of PDD-NOS is often considered when a child is 2 and gets PANDAS (sensory issues, tantrums)
Whenever you see an article/paper with a ? in it…this paper is not supporting PANDAS.
PANDAS is not just a pediatric disease.
The onset of PANDAS is NOT always acute (thank you, Dr. T!)
There are low-strep responders. ASO never rising can throw off clinicians.
Strep in the appendix has occurred (the know from removing the appendix)
When you see a kid who had 5 diagnoses, you’re probably talking about PANDAS.
It’s a pervasive disorder.
Onsets of PANDAS can occur at different ages:
If a 2 year old child is diagnosed with bipolar disorder, you’re probably looking at something more like PANDAS.
Infantile Mania Syndrome mimics mania, severe ADHD. Ends up with PDD-NOS diagnosis. There is an atypical response to SSRIs and stimulants.
Juvenile onset mimics Tourettes and OCD
Adolescent onset: Kovacevic Syndrome: pure OCD, anxiety.
Leroy Syndrome—tics; can be confused with conversion disorder (the star athlete or student falls off….)
Acute crises: Exorcist Syndrome—similar to seizures. Voice changes. Limbs flail.
PANDAS is an interaction between the immune system and the brain; both of these symptoms are very complicated. This is a neuroimmune disease.
The innate immune system and the adaptive immune system (via vaccines, exposure)
The innate immune system controls the adaptive immune system
Not just strep can cause PANS. Other bacteria, viruses, etc. can trigger this illness.
How do these huge antibodies get across the BBB? (refer to Ditran’s model)
Many patients are “seronegative.”
Mystery: why do symptoms have that lightning-like onset?
There may be other pathogenic mechanisms at play.
Mitochrondria….
Dr. Ken Bock, integrative doctor
There is a neuro-immune connection
The central nervous system drives immunity
Check out his website for more info. http://www.bockintegrative.com
Gut-Brain Axis
TH17 cells cross the BBB
Leaky gut, leaky brain
TH1
TH2 regulate cells that produce antibodies
Treg balance the TH1 and TH2
Cytokines: immune messenger molecules
TH1: adaptive/memory, cell-mediated
TH2: adaptive/memory, antibodies
Th17 autoimmunity in the brain
Dr. Bock: inflammation begets inflammation and now we have a cycle.
The link between GAS and cellular responses could tip the balance toward autoimmunity. It’s not necessarily molecular mimicry.
There is increased asthma and increased allergies (i.e. peanut allergies) in the world today. Heavy metals can affect all levels of immune function.
BPA is in ATM receipts!
A healthy immune system keep T and B cells in check.
Fasano on celiac disease (here’s a link http://www.livingwithout.com/issues/4_15/qa_augsep11-2554-1.html)
Acute inflammation is a healthy response but not when it’s chronic.
Rheumatic fever, glomerulonephritis (kidneys) and Sydenham’s Chorea are all accepted post-strep disorders.
PANDAS is an “auto-inflammation”
Dr. Fasano: Tacks Law:
“If you’re sitting on a tack, it takes a lot of Risperdal to make it feel good. The appropriate treatment for tack-sitting is tack removal.”
“If you’re sitting on two tacks, removing one does not produce a 50% improvement.”
Chronic illness is, or becomes, multifactorial.
Treat sinuses with meds that get into sinuses
Gupta: IVIG for kids with autism: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2883089/
Diet as anti-inflammatory
Omega 3 EFAs often given
Curcumin increases production of IL-10; is very helpful
Vitamin D3 can induce Treg cells but too much Vitamin D is toxic.