West Coast PANDAS Symposium

[3bmom]

The PANDAS/PANS Symposium was a brain intense, but wonderful gathering of Dr.s and parents put on by PANDAS Network in San Francisco, Saturday April 26. Families came from England, Scotland, Canada and Mexico. Maybe others I have missed.

 

I was never the "note taker" so I apologize for any inaccurate info ahead of time. I found all the Drs passionate about helping our kids which is a nice change from the blank look or grimace I have received in the past.

 

I have bits and pieces I took away and will mention them here in case there is a dot for your child's picture of this puzzle. Any other families who were there please add your thoughts and comments! They did video tape it and hopefully will have it up soon on the website and YouTube.

 

Dr. S came out to a standing ovation. She talked about the Cam Kinase II /activity and anti-dopamine D2 Receptors along with evidence of cross reactive antibodies. 1 in 5 have the eating issues and there also is a disruption in REM sleep. Besides the throat, strep can be found in the sinuses where some had cysts removed along with the Uretha and Anus. Titers were only elevated in 2/3 of patients.

 

Augmentin also decreases Dopamine and Glutamate.

 

Dr. B-A brought in newer concepts of Encephalopathy. She is a pediatric Neurologist and discussed cytokines and brain inflammation. PANS should be under the umbrella of Psycho Immunno Neurological Syndrome. She found a ratio of males 5:1. She also thought a lumbar puncture was important and using Immunotherapy for treatment. There may be involvement of the Vagus nerve.

 

Dr. F from Stanford Neuro Immune Clinic discussed abnormal reactions of the Innate and Adaptive Immune System. She talked about the intersection between PANS and other diseases.

 

She felt the medication Ritux X2 was dangerous and would only consider it in very serious cases. I think, don't quote me but it makes the T cells be quiet and lasts about 6 months till symptoms return. She also is part of a consortium of Dr.s working on this puzzle with Psych, Rheumatology, Immunology , and Infectious Disease.

 

Dr. C from the Univ of Missouri related PANS to "The Blind Man and the Elephant" with every specialty looking at it from a different angle. I have Rifampin written in my notes if persistent but don't know if he said that or someone else.

Pen VK was also discussed to set your timer for every 12 hours otherwise a missed dose leaves you unprotected for a few days. We can't take penicillin. Maybe someone can chime in about this.

 

The next morning we had very informative talks with an Integrative nurse. After all the coordination of the event she still had the time to answer many parents' questions.

She said there are 100 different strains of Lyme and the CDC revised their numbers last year to 300,000 new cases.

 

As a parent of a PANDAS son she said trust your gut and just think what is the next step you can do. Most important is to get the bowels moving and eliminate constipation. Her son spoke words of encouragement to the parents during the morning session yesterday and he is excited to start college next year.

 

Kathleen from Moms Across America talked about pesticides and that Glyphosate in Round Up chelates minerals from the body. These important minerals like Magnesium, Zinc, Copper are the engines to hundreds of functions in our body especially the brain. This pesticide also kills off your gut flora and makes the intestines permeable creating a multitude of allergies and immune responses. We use to only spray the soil but with the creation of GMO (Genetically Modified Organism)food we now spray the plant heavily with pesticide too and this correlates with a rise in PANDAS in our kids. GMO crops started in 1996 and in 1998 Swedo started studying PANDAS.

 

GMO Corn has BT toxin DNA spliced into each kernel. It explodes the bug's stomach when it bites into the corn. Our bodies don't recognize this inserted DNA to our food and creates an inflammatory response. This is in 80% of corn grown in the USA. Makes me stop using products with corn syrup. Mexico has abruptly stopped all growing of GMO corn. Yeah!

 

Pesticides are sprayed in the drying process of all grains contributing to Celiac and also sprayed on rice used in Gluten Free products. She is working with companies open to change this for kids with allergies. I didn't know but they spray the fruit at the end of growing season too!

 

The majority of our animals have been fed with GMO feed. She says go to your local farmer's market, get to know your farmer and ask questions. Buy Organic. Vote for labeling, 64 other countries have the Right To Know and you can vote with your wallet at the grocery store.

 

I personally enjoyed going. It is so nice to be with parents who "Get It". There were stories exchanged, paths we have travelled, and most important successes sprouting hope.

[SSS]

Thank you!

[4Nikki]

Some good stuff. thank you so much, I didn't feel I could leave mom with DD flaring. Any clue about how many were there?

[Dedee]

Yes it was very enjoyable. Enjoyed meeting you 3boymom. Learned so much.

 

Dedee

[EAMom]

Hi 3bmom and others!

 

Thanks for posting! Here is a news article on the conference http://www.mercurynews.com/science/ci_25646083/parents-doctors-share-hellish-experiences-pans-pandas-disease

 

Here are my notes from the doctors. I don't really have notes on the other presenters (parents, Amy Smith's son, etc). I also took notes from the afternoon discussion which I might post at a later date.

 

Swedo:

-no good drug against dopamine d2 receptors (future treatment?)

 

-she mentioned a study of 5 children with non-pandas OCD who got plasmapheresis and there was no improvement (here's a link

http://www.sciencedirect.com/science/article/pii/S0890856710601104 )

 

-sleep studies: PANDAS kids have a REM behavior disorder (kicking, flailing)

 

-urinary frequency is a hard neuro symptom

 

-perianal strep is a common cause of treatment refractory PANDAS

 

-NIMH is thrilled to receive strep samples (they want to do strain analysis)

 

-ASO, anti-dnase B, ACHO (sp?) are 3 strep titers. They will only pick up 2/3 of cases and need a second set of titers in 6-8 weeks (looking for rise). Note: she didn't mention anything about timing...that you need to get the sample in the acute phase, but I also assume this is important (so looking for rising titers may not be useful months or years later)

 

-ANA 56% of PANDAS kids were ANA positive at the NIH (note: she said 10% of healthy kids are ANA positive)

 

-Swallowing study (I have this in my notes but no explanation, I assume this means PANDAS kids may have swallowing problems and a study is recommended?)

 

-Polysonography 1) disruption of sleep wake cycle 2) failure to establish atony during REM

 

-EEG to r/o encephalopathy

 

-Lumbar punctures to obtain CSF samples looking for anti-neuronal antibodies to make sure it's not something else. (Note: I don't know if she was recommending this to all PANDAS kids? or just that they were doing this at the NIH? also, I don't know how many "something elses" they are finding when they do Lumbar punctures eg how useful this really is in practice)

 

-I realized in hindsight that she didn't mention the Cunningham test, which I thought was a little odd (note: our rheumy said insurance is often covering the cost of the test

-clavulonic acid: affects dopamine and glutamate

 

Treatment:

"mild"-antibiotics

"can't get out of the house"-IVIG (I assume this means with abs, not alone! In the NIMH studies they used long term abs after IVIG)

"life-threatening" (suicidal, danger, anorexia)-plamapheresis (I also assume this means also follow with antibiotics, as they did in the NIMH studies)

 

 

-SSRI-start with 1/10 of the regular dose

 

-The team at NIMH would be happy to talk to doctors (a Canadian mom was saying she had trouble getting any sort of treatment)

 

-follow AAP recommendations for prophylaxis for SC. This is antibiotic prophylaxis until age 21. She said if that isn't practical, then she said until they are symptom free for 2 years. Since the immune system is activated, you need to get back to the point of tolerance.

 

-recommends judicious use of CBT and psych drugs (ERP+ medication) --note: she mentioned a study where ERP and medication helped 70% of OCD in kids note: I think she is referring to this study, which isn't of PANDAS kids, just garden variety OCD, and all the kids were 7 or older... http://www.sciencedaily.com/releases/2006/10/061018094715.htm) (IMHO I'm not sure you can extrapolate from this study to PANDAS kids, esp younger ones and severe cases where the autoimmunity isn't yet under control)

 

-recommends a book "How I drove OCD off my land" (Is this it? http://www.librarything.com/work/7767377 )

 

-someone asked about PANDAS in adults. She said they do see rheumatic heart disease in young adults. Also, she said (? notes unclear) there are cases of "adult" acute onset, up to 30 years of age. Dr. K. is treating young adults with IVIG. (Of course, there can be cases with onset as a child, which persist into adulthood. But, I think the question was about onset as a young adult?)

 

-if you treat soon in the course of illness (with antibiotics-not sure how long, 1 mo?), they many never have any other problems. Diana P. says PANDAS network has record of about 40 such cases...so these may not require prophylaxis??

 

Alarcio:

 

note: her lecture was pretty "science-y" and I was sitting in back and couldn't see the screen very well...I am looking forward to the you tubes videos! (She also went over some PANDAS/PANS cases.)

 

-prostaglandins affect neuro circuitry

 

-disruption of tight junction (in blood brain barrier): cytokines, antibodies, stress

 

-antibodies in the brain can go into the rest of the body

 

-chronic latent infection and chronic underlying inflammation can disrupt the blood brain barrier

 

-anything that stimulates the immune response can affect the brain

 

-antibodies and cytokines (defuse?) against the bbb

 

-histamine in the brain

 

-hashimoto's, pandas, encephalopathy are all under the umbrella of psychoimmuno neurological syndrome (my notes are sketchy here)

 

-mentioned on how the fields of psychiatry and neurology are artificial divisions (not sure she used this word)...She said "It's all the same brain!"

 

-Problem--no practice guidelines for doctors

 

-there is also a non-microbial role of antibiotics. They are anti-inflammatory and neuro-immune (note: I hope I got this right! she was going fast and I was trying to look at her slides which I couldn't see well, there's a bunch I missed.)

 

Frankovich:

 

went over several PANDAS/PANS cases. Not all were Swedo's "acute onset". Some took 8 or more weeks to development of full PANS symptoms.

 

-abnormal immune activation

 

-difficulty clearing infection

 

-EARLY-innate immune system

 

-Chronic arthritis- (I think she was using arthritis as an example? similar process in PANDAS/PANS?)-adaptive immune system is involved, programmed immune system that is not turning off

 

-Alzheimer's patients deteriorate with infection

 

-Tessa Gallo http://news.msn.com/in-depth/misdiagnosed-bipolar-one-girls-struggle-to-get-the-right-treatment had high antibodies to dopamine, lysoganglioside, tubulin, and cam-kinase ll (this is the Cunningham test). She also had had a positive histone antibody ( think this is a newer test they've been doing for about 6 mo.?). It sounded like they did extensive testing to find an underlying infectious trigger, but didn't find one. Dr. F. when over her story (as did her mother in a separate presentation). She did respond to steroids, and later had further improvement with pheresis and rituximab (a powerful immunosuppressant, potent and dangerous so you only want to use in the most severe cases).

 

-cellcept-makes t cells and b cells quiet

 

-rituximab-potent dangerous immune suppression

 

note: I think Tessa is on Rituximab, not sure about cellcept? Dr. F. says an injection lasts 6 mo. For Tessa, it seems to last a little less, as she seems to flare (2x ?) each time towards the end of the 6 mo.

 

-only 14% of the patients they see in their clinic meet the very strict PANDAS criteria

 

-47% of 1st relatives (sibling or parent) of PANS clinic patients have inflammatory back pain

 

-41% of pans patients have a 1st degree relative with a psych. diagnosis (are these relatives undiagnosed PANDAS/PANS?)

 

New onset PANDAS cohort

-urinary frequency 65%

-pain 94% at fibromyalgia tender points (sensory amplification). She sees rheumatologic symptoms in PANS patients (you have to know how to do the test, and also kids won't always admit to pain, but if you look at them you can see it is hurting).

 

-Dr. Kiki Chang (Stanford psychiatrist) is studying these kids (need money for studies, if they have studies, then Stanford will back them on seeing more kids in PANS clinic...or something like that!). Functional MRI's, banking serum.

 

-trying to develop treatment guidelines, PANS is very non-specific now

 

-even "simple" PANDAS cases can get 2-3 mo. to get back to baseline

 

 

Cooperstock:

 

-vaccines area touchy issue (ha ha no kidding!) (I don't have this in my notes, but I think he was one who had a case that was triggered by vaccines?)

 

-recommends strep culture at onset and flares

 

-can have prolonged ASO ADB, strep antibodies (not sure what this meant? only PANDAS kids, or all with strep?)

 

-strep can persist (eg in tonsils) for months and months. It can colonize deep in the tonsil tissue. Culture can misrespresent (be a false negative)

 

-does strep colonize the nose?

 

-mycoplasma-won't know unless you test for it. It's very common

 

-parts of the basal ganglia: caudate is OCD, putamen is tics, (there was third with was ADHD?)

 

-one molecule stands out....GlcNAC (N-acetyl d glucosamine)

 

-strep can induce GlcNAC antibodies, GlcNAC also present on brain targets

 

-GlcNAC is a key autoimmune target on D2, lysoganglioside, tubulin, neural cell (notes sketchy here)

 

-can other common bacteria cause increased GlcNAC?

 

-mentioned a vaccine (development far down the road) to reverse autoimmune dz--a tolerazing (sp?) vaccine (reverses type 2 diabetes)

 

-a mom asked about a PANDAS kid with lots of cavities. He said "Dental carries are an infectious disease". (Amy Smith NP recommended testing for celiacs as well, because that can cause erosion of teeth and pre-dispose to cavities)

 

Smith:

 

-infection triggered neuropsychiatric syndrome

 

-30% of her PANDAS/PANS cases are CDC positive for Lyme

 

-flaws in the 2 tier testing for Lyme...it only picks up 56% of Lyme cases

 

 

 

 

 

 

 

-

Edited May 4, 2014 by eamom

[EAMom]

Kathleen from Moms Across America talked about pesticides and that Glyphosate in Round Up chelates minerals from the body. These important minerals like Magnesium, Zinc, Copper are the engines to hundreds of functions in our body especially the brain. This pesticide also kills off your gut flora and makes the intestines permeable creating a multitude of allergies and immune responses. We use to only spray the soil but with the creation of GMO (Genetically Modified Organism)food we now spray the plant heavily with pesticide too and this correlates with a rise in PANDAS in our kids. GMO crops started in 1996 and in 1998 Swedo started studying PANDAS.

 

GMO Corn has BT toxin DNA spliced into each kernel. It explodes the bug's stomach when it bites into the corn. Our bodies don't recognize this inserted DNA to our food and creates an inflammatory response. This is in 80% of corn grown in the USA. Makes me stop using products with corn syrup. Mexico has abruptly stopped all growing of GMO corn. Yeah!

 

Pesticides are sprayed in the drying process of all grains contributing to Celiac and also sprayed on rice used in Gluten Free products. She is working with companies open to change this for kids with allergies. I didn't know but they spray the fruit at the end of growing season too!

 

The majority of our animals have been fed with GMO feed. She says go to your local farmer's market, get to know your farmer and ask questions. Buy Organic. Vote for labeling, 64 other countries have the Right To Know and you can vote with your wallet at the grocery store.

 

.

Hi! I wasn't there for this presentation (it was on Sunday?) but I did go to a lecture by Dr. Stephanie Seneff (from MIT, but she was in the Bay Area that weekend...maybe I should have invited her go to the conference!) last Monday. (Dr. Seneff is my neighbor's mother!) Here is a link to her homepage which has links to her presentations (including the one I went to on April 28, 2014). http://people.csail.mit.edu/seneff/

She also has many you tube videos up. Here is one from 2013 https://www.youtube.com/watch?v=MqWwhggnbyw

Her material was eye opening...basically she saying Roundup (glyphosate) is THE primary underlying cause behind the RISE in autism. I think she has mentioned Mom's Across America in her talks and some of Seneff's papers are listed on the Mom's across America site http://www.momsacrossamerica.com/tags/samsel_and_seneff

 

GMO foods are especially bad because they basically absorb much more roundup than non-gmo food when sprayed.

 

 

 

 

 

 

 

Edited May 2, 2014 by eamom

[ashley]

Thank you so much for posting your notes!! Does anyone know when the videos will be available or how to find them?

[rowingmom]

Thank you all for the notes.

 

3bmom alerted me to Stephanie Seneff's work and I think she is right on the money about glyphosate and GMOs. Our grandparent's generation were fine, ate gluten/grains and didn't seem to have the difficulties with autoimmune/celiac diseases we do.

 

Something is going on, and it's not genetics.

 

http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf

 

http://www.mdpi.com/1099-4300/15/4/1416

 

Thanks also for the link to MomsAcrossAmerica. The website looks like a good one!

Edited May 2, 2014 by rowingmom

[4Nikki]

Awsome posting gives us sometthings to go to the doctor with.

[EAMom]

Hi Rowingmom,

 

your 2nd link didn't work for me.

[rowingmom]

It's not working for me either now - it did this morning. And it doesn't seem to matter where I try to access it from. There are several sites citing the paper, but they all use the same link. I did find this however:

 

http://monsantoblog.com/tag/glyphosate/

 

Got to wonder.....

 

Try this one:

 

http://groups.csail.mit.edu/sls/publications/2013/Seneff_Entropy-15-01416.pdf

 

I have saved a copy to the hard drive of my computer if that one doesn't work.

 

Here is a link to an interview with Dr Seneff on Mercola:

 

http://articles.mercola.com/sites/articles/archive/2014/04/15/glyphosate-health-effects.aspx

 

 

Edited May 2, 2014 by rowingmom

[EAMom]

Here's an article on breast milk contamination with glyphosate http://sustainablepulse.com/2014/04/06/worlds-number-1-herbicide-discovered-u-s-mothers-breast-milk/#.U2Qva_ldXDU

 

Your second link works now!

Edited May 2, 2014 by eamom

[rowingmom]

For me too - crazy! Maybe too many people were trying to read it. That would be good!

Edited May 3, 2014 by rowingmom