The Conference: Part 1 of 3

I was one of the lucky ones who got to attend the first-ever Northeast PANDAS/PANS Conference in Providence, Rhode Island. I had an exhausting blast. It was spectacular to hang out with new and old friends, and to be in an atmosphere in which everyone spoke the same language*. It was also overwhelming. So much scientific information, so many emotions. And my own Lyme-induced fatigue crept up on me every afternoon. That didn't stop me from going with friends to see WaterFire for Veteran's Day in Providence Saturday night. I needed to get out of the hotel and BREATHE. 

I did promise to take notes. Fortunately, some of the presenters posted their PowerPoint presentations on the Northeast PANS/PANDAS website and you can find it here.

I wrote as quickly as I could. I nearly filled a 60 page composition book with all the notes I took, but I have to admit, I did NOT understand everything I wrote. I still jotted it down, hoping to look up words and ideas later, and supposing that another scientist might remark on it. So, I have included many one-liners here, with a couple of pauses for my thoughts.

The dedicated doctors and scientists impressed me and I am incredibly grateful for them. It was wonderful to see Dr. Charles Ray Jones, our Lyme Disease pediatrician and fighter, there, along with his friend and wonderful neuropsychologist, Dr. Judy Leventhal. Dr. Trifiletti gave an amazing presentation and could have spoken more about his genetic research. There were many other attendees and presenters who have done so much to help our children.

There were also a couple of surprises. Dr. Latimer and Dr. Cunningham advocated vaccines to a stunned, silent audience. Plasmapheresis (PEX) was advised, although many of our children recieve IVIG first. I wondered about hidden agendas. No longer do I take the word of one doctor without consulting with another doctor whom I trust. 

So, following this is a long list of information. Think for yourself. Check out the facts. Doctors and scientists don't necessarily agree on every item, and parents who have fought in the trenches, vehemently disagree with some of the following. But there is much good information here, so use it wisely. And when I get through the rest of my parent/teacher conferences and teaching pretty healthy fifth graders outside of my home, I'll post the rest.

*For a great blog about speaking PANDAS, click here.

Conference Notes:

Dr. Susan Swedo, Chief Pediatrics & Developmental Neuroscience Branch at the NIMH: Post-infectious inflammatory response 

Swedo:  15 years of negative information that this doesn’t exist. Call it PANS/CANS. This is “controversial”—that’s what we need to deal with. Almost like AIDS in the 1980s.

Swedo: confront the controversy head-on.  Debate with AAP was successful. One district at a time (Leckman)  Unified approach when educating—share approved information.

Dr. Susan Swedo:  “It’s been 25 years and parents are still being blamed for their kids’ illness.”

 “Freud himself described OCD as a biological/neurological illness."

Swedo:  PANS is  a misdirected immune response and not an autoimmune illness.

If you can’t remember the exact day and time your child changed, it might not be PANDAS. ????? (

I found this to be controversial and Dr. Trifiletti would come up with a different theory the following day. I can't recall the exact day and hour, and there were insidious symptoms all along that we never caught. Yet four different doctors have diagnosed my chid. I'm not in agreement with this.)

Comorbidity with ADHD, OCD, tics, depression, etc. short-term memory problems, urinary urgencies.

Titers—don’t chase titers. It’s only a rise in titers that indicates a child has an infection. Once high, titers can stay there.

65-70% of children will have strep during the school year.

Strep carriers are common.

There were negative studies trying to prove PANDAS doesn’t exist. But they were looking at the wrong subjects at the wrong time in the wrong place.

PITANDS: they knew from the beginning that strep wasn’t the only strep (chicken pox, influenza, especially H1N1, mycoplasma, Lyme, etc. can all be triggers.)

PANS vs. CANS:  Pediatric is an appropriate term because it goes up to age 24/25. PANS is pediatric. CANS means Childhood.

There are people deeply invested in this NOT getting respect.

Criteria for PANS includes a foudroyant (lightning-like) onset.

Eating disorders are often the result of restricted eating, fear of vomiting, having difficulty swallowing, and eventually, body dysmorphia.

Only 3% of the population is susceptible to rheumatic fever. Perhaps 3% is susceptible to PANS?

Or maybe more people. The incidence of PANS might actually be quite high and it’s only the unlucky ones who end  up with severe issues.

Keep kids on antibiotics throughout college. Do kids with PANDAS outgrow susceptibility after adolescence?

Psychotropic drugs: Start low and go slow

Plasmapheresis has fewer risks but is a bigger ordeal.

Volume of the caudate in the brain changes after PEX treatment. Before treatment, a caudate showed a 20% enlargement. IVIG can also normalize the parts of the brain that are inflamed.

Dr. Ditran Agallio, UC Irvine, Development and Cell Biology

There’s a lot of swelling in the basal ganglia.

The blood brain barrier is an important gatekeeper to the brain.

It limits the entry of pathogens, immune cells and drugs.

Glucose is essential to the function of the brain.

How is the BBB invaded? Hypothesis: the destruction of tight junctions between endothelial cells.

Selective interaction of antibodies with endothelial cells; these are transported to the brain.

Repetitive GAS Infection: characteristics of immune cells change

Takes several infections for this to occur

This is a normal immune response

The body needs to balance

Hypothesis:  dysregulated Th17 Immune Response to GAS infections

Immune cells enter the brain after repeated intranasal GAS infections

Where are these immune cells found in the blood?

Olfactory bulb (region of brain)—there are a lot of t-cells there, crawling along the nerve

Once in the brain, within 48 hours, there is a shift in migration to the posterior parts of the brain.

If a child is prone to autoimmune disease, the response it going to be higher

These parts of the brain are affected: Lateral hypothalamus (has to do with eating) and the amygdala (processes fear)

The BBB is leaking.

Some of the antibodies entering the brain use another transport mechanism.

There are resident immune cells.

And increase number of activated microglia in mice suggest that the brain is in a state of inflammation. This occurred after strep was introduced only to the nose, and not to the brain.

How long will T-cells stay in the brain? 58 days after recurrent infections (in mouse.) Which, for a mouse, is a very long time, considering that mice only live a couple of years.

Strep: specific T cells will remain in the brain for a long time and be re-activated with another infection.

How do T cells get into olfactory bulb? They crawl along nerves and enter the brain. Strep-specific T cells can enter the brain. Immune cells can invade the central nervous system.

There are specialized gateways in the spinal cord and brain for T cell entry (found in autoimmune cases of central nervous system.)

What are the long-term effects of BBB breakdown for neuropsych disorders? Fahr syndrome was mentioned.

Certain areas of the brain are much more susceptible.

Dr. Beth Latimer (neurologist):

One size does not fit all. PANDAS is a tragedy because of the lack of recognition and because it’s a life-threatening condition and should be treated as such.

Why do we treat strep when it will go away by itself in 3-4 days? We treat to prevent autoimmune diseases.

They are using plasmapheresis in extreme cases and it’s working.

When children with PANDAS are sent to psychiatric facility, it triggers separation anxiety and they children are worse than ever.

Psych facilities don’t treat medically and medical facility don’t treat if there are psych symptoms. Big problem.

As the brain changes and evolves, the symptoms change and evolve.

Reading takes 4 years if you start at age 2 and 4 seeks if you start at age 6.

The younger the age, the more dysregulated the symptoms.

Autism is no 1/88 but another recent survey claims 1/50. It’s more prevalent than ever before. It is autoimmune encephalitis?

Low Vitamin D is associated with autoimmune infections.

IL-17/ TH1:  big marker for MS

Thought to open the BBB

This is also implicated in asthma

TH1 -  kills?

Why is there an increase in autoimmune disorders in children? Is PANDAS new?

Could it be possible that Flonase supresseds the immune system in the nasopharynxz?

Also, aspirin is no longer used much due to fear of Reyes (this is not a suggestion to use aspirin.)

Rarely does she see African American children with this disorder. Genetic?

Is there something different about the gut flora in these kids? They can better tolerate high antibiotics for extended amounts of time than can the general population.

Kids can reactivate even when they’re on antibiotics.

If other kids are getting FluMist and your kids are I school, they’re getting the FluMist (shedding.)

Getting vaccines to prevent infections is very important (Note: the room was silent at this news. Many parents of children with these diseases have been advised to withhold vaccines, especially if the children are immune-deficient. Many people wondered if there’s another agenda…appeasing the AAP? Because there are associations with NIH?)

Bleach baths are suggested to help get rid of strep on skin, etc. Bath entire body except head. ½ cup of bleach to 40 gallon of water; soak 5-10 minutes.

Rifampin works great for strep but use it quickly; it can cause liver damage. Use clindamyacin, followed by rifampin.

How do we get T cells out of the brain? IVIG will shut off you own production of antiobodies.

Children’s immune systems forget…as children grow. That’s why we have to re-vaccinate. 

There are zero complications to plasmapheresis.

IVIG takes 2-3 weeks to work. Plasmapheresis can be much quicker.

Augmentin is an anti-inflammatory.

Planquenil is also anti-inflammatory.

If you’re on antibiotics and you have flares, ride it out for a week or take a 5-day burst of steroids (NOTE:  Children who have LYME Disease CANNOT take steroids.)

For H1N1: sometimes 2 days of tamiflu.

Dr. Kyle Williams/Yale (psychiatrist)

 There is strep A-F

“All kids get strep throat,” people will say. Group A Strep is one of the most prevalent diseases in childhood.

 Strep is associated with a wide variety of autoimmune disorders, moreso than any other diseases:  Sydenham’s Chorea, rheumatic fever, etc.  Sydenham’s Chorea looks really similar to PANDAS and is treated prophylactically with antibiotics.

PANDAS vs. Sydenham’s

In PANDAS, there is no cardiac pathology, but there is usually some type  of cardiac pathology in Sydenham’s Chorea.

Why do some people get PANDAS instead of rheumatic carditis or Sydenham’s?

There is a dysfunction of the basal ganglia. OCD and Tourette’s are both mediated by this dysfunction.

There is no genetic test for OCD right now.

Only a clinical presentation will show difference between childhood OCD and PANDAS.

Serum from patients with both SC and PANDAS reacts with proteins expressed to the basal ganglia. Antibodies also cross-react with an extra-cellular strep protein.

Hypothesis:  Find target (basal ganglia) following infection.  An MRI can show evidence of a basal ganglia infection (my question—what kind of MRI, since my son has had 2 and we’ve never seen anything?)

There is increased volume to parts of the brain:

8% caudate

7% pallidal

5% putaminal

Post-treatment saw a 30% decrease of the caudate volume and a 35% decrease of the putamen volume

Inflammation: through treatment, the parts of the brain that are inflamed, decrease in size.

What cells are responsible for this change in volume?

Treatment:

With anti-autoimmune therapies

In psychiatry, placebo responses can be VERY strong.

IVIG is highly purified IgG

The infection rate is astronomically low

PEX: 1 month later there is a 49% decrease in tic severity

IVIG vs. PEX

Scientists have “no idea” how the IVIG really works

Comments

[teresa]

excellent notes!