texas a&m attendees

[norcalmom]

tpotter - Did you catch the name of the Lab that Cunningham is opening - Molecularly Labs or something like that? She didn't really make and announcement - she just said she is starting a commercial lab - but she had a slide with a name. So might be further along that just trying to start it?

 

I wish Cunningham had presented more info on newer stuff. She did say that they ran correlation on about 110? samples and looked for correlations in the antineuronals and symptoms. They only used samples that had clear strep association.

 

I think Anti -Lyso was usually associated with Tics.

D2 usually higher for pandas patients. The numbers aren't absolute. But if you are considering ani-phych meds, you might want to look at the Dopamine numbers to see if they are really high and a med that can block Dop might be the way to go.

 

A consistent theme I heard the first day was -and this is for all the other post infectious diseases of the nervous system like MS, Carditis, Lyme - is early aggressive intervention to prevent the disease from moving to either chronic, or in the case of the cardiac stuff - fatal phase.

 

I'll post more later today when I have some time.

[tpotter]

tpotter - Did you catch the name of the Lab that Cunningham is opening - Molecularly Labs or something like that? She didn't really make and announcement - she just said she is starting a commercial lab - but she had a slide with a name. So might be further along that just trying to start it?

 

I wish Cunningham had presented more info on newer stuff. She did say that they ran correlation on about 110? samples and looked for correlations in the antineuronals and symptoms. They only used samples that had clear strep association.

 

I think Anti -Lyso was usually associated with Tics.

D2 usually higher for pandas patients. The numbers aren't absolute. But if you are considering ani-phych meds, you might want to look at the Dopamine numbers to see if they are really high and a med that can block Dop might be the way to go.

 

A consistent theme I heard the first day was -and this is for all the other post infectious diseases of the nervous system like MS, Carditis, Lyme - is early aggressive intervention to prevent the disease from moving to either chronic, or in the case of the cardiac stuff - fatal phase.

 

I'll post more later today when I have some time.

 

 

"Autoimmune Diagnostics for Heart and Brain"

[norcalmom]

OK - here are my notes. Don't quote me on any of it - these people are presenting their life's work in 45 minutes or less, and I understand only a little of what was even said!

 

 

Symposium notes day 1

A number of speakers from different disciplines of post infectious immunity presented their area of specialty or research. The point of this day seemed to be to connect pandas researchers and doctors, make them aware of each others areas and current thoughts and research. What I heard mentioned in every presentation at some point (be it MS, Lyme, Cardiac…) was that patients that had early, aggressive treatment faired much better than those that waited.

Examples from 3 different presenters (somewhere in their hour long presos)

MS – one very aggressive study recently done showed that if bone marrow replacement done in very early stage of disease – there were NO flairs for 36 months after in any patients (only 4 in study). This is consistent with other MS data that was shown (although number who flared and how often, less remarkable). For those that were further along in the disease, no improvement resulted with BMT.

Lyme – Again, if caught early and treated with appropriate antibiotics (which is not a 10 day course – it’s a longer, heavier course), a very, very high chance of complete recovery. The longer the disease goes unchecked – the lower the chances of 100 percent recovery, and the more intervention required to effect recovery (IV antibiotics.)

And- Autoimmune Myocarditits – if caught early curable, if not caught can become chronic and lead to dilated cardiomyopathy (sometimes fatal).

 

Noel Rose talked about the how the Progression from viral infection to autoimmune heart disease is cytokine-regulated. And his work finds that Interferon-gamma (IFNγ) is protective in myocarditis

And IL17 production is increased in the hearts of –/–

IIFNγ mice with EAM

 

Also –

• IL23, but not IL12, is required for the development of

myocarditis

• Th17 cells induce severe myocarditis, compared to Th1 cells (those lead to less severe form)

He also has some mice studies showing that mice with Th17 can be protected from developing Dialated Cardiac Myopathy by vaccinating with IL-17 antibodies (they gave the mice the antibodies after the infection / automimmune process started, they still got sit, but not the deadly from of the disease)

 

Don’t quote me on any of this stuff. Day one was way over my head. I watched a few you-tube videos on immunology by khan academy (fabulous by the way) in the airport on the way to the symposium, and that is the extent of my background in immunology! At least I got the gist of what the day one presenters were saying.

 

It became clearer as the day went on how complex post infectious immune disorders are. Many factors are being dealt with. Most presenters said that they thought genetics, environment, viral/bacterial infection, something effecting BBB and timing of exposures all played a role. Very complex. Almost infinite number of possible combinations and permutations to explore…and the last presenter was a woman studying genetic analysis – all she does all day is crunch numbers for GWAS, genome wide association study – to provide unbiased genetic complex etiologies of neurobehavioral disorders. She is looking at schizophrenia and Autism at the moment.

 

dinner –

 

I sat with some postgraduate students from Cunningham’s lab during dinner. What was interesting was that these young scientists are so disconnected from what they are actually studying. I think I’m one of, if not the first pandas parent they talked to. One confessed that he was doubtful the conditions existed until Cunningham played a video of a girl with severe Chorea (not pandas patient – SC patient). I think Dr C was good to bring almost her whole team out there to expose them to some of the real world beyond the lab, especially the newer members. Anytime we have the opportunity we need to thank them and point our how they changed our lives, and the course of our children’s lives, and how important what they do is we should do it. (and these are people that benefit from Seeing proof -they are after all research scientists! ).

 

Day 2-

Day 2 was mainly pandas presenters day. Unfortunately we lost many of the doctors that were present on day one. We did gain parents however, three of whom presented. They all had very moving stories and made the disorder not just personal, but real to those that only look at mice or cells day in day out.

 

Swedo-

She is keeping the study criteria Very, very tight I hear. She wants kids after the first, or most, second exacerbation. It’s a barrier to participation because - IVIG is scary, and so is a lumbar puncture, two MRI’s and many blood tests and traveling with a pandas kid in first exacerbation (?!), so most want to try antibiotics first (sound familiar???!! Didn’t we all?!) and if you do that – you will be ruled out of the study. I heard there are less than 10 in it so far. I asked if a significant number of those kids also have Lyme – she said no, but she thought that most of the kids are from low-risk Lyme geographies. She is currently writing study for Lyme (I’m assuming presents like pandas). She said the pandas study going very well right now.(except in terms of participants – that’s from someone else not her).

 

The A in PANS stands for Acute-onset. Not Autoimmune. I commented that the “overnight onset” wasn’t always “overnight” – and told her how my son presented, and the problem with the word. She agrees – said his presentation not uncommon, and even mentioned Murphy’s “mini exacerbation” theory (one of the reasons I don’t see my child as “overnight” – its something he did a couple years ago, but at a much milder level. I think she is keeping the focus on overnight onset and strep because she has to keep it really tight just to get numbers and acceptance she needs for the med community to believe it.

 

Here is DRAFT criteria for PANS dx. Note that it does not include Strep – pandas is a subset of PANS. I think this was also in “a way forward”..I know I’ve see it before.

 

DRAFT Criteria for Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)

I.

Abrupt, dramatic onset or recurrence of obsessive-compulsive disorder (Eating disorders may be an alternate manifestation of OCD and are counted here)

II.

Concurrent presence of additional neuropsychiatric symptoms, with similarly acute onset, from at least two of the following seven categories (see text for full description):

1. Anxiety

2. Sensory or motor abnormalities

3. Behavioral (developmental) regression

4. Deterioration in school performance

5. Emotional lability and/or depression

6. Urinary symptoms

7. Sleep disturbances

III.

Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others. Note: The diagnostic work-up for PANS must be comprehensive enough to rule out these and other relevant disorders. The nature of the co-occurring symptoms will dictate the necessary assessments, which may include MRI scan, lumbar puncture, electroencephalogram or other diagnostic tests.

 

She also had a slide that show how she sees this break down:

PANS is a Very large group –

PANS

Subgroup 1) PITANDS – infectious triggers (has two subgroups a, and

a)Strep (pandas)

b)Other microbes – Lyme, mycoplasma, others?

Subgroup 2) Non-infectous triggers

a)Environmental, metabolic, others?( Vaccines Impact of Reye syndrome and Aspirin -ban?)

 

Cunningham’s

 

Cunningham:

Presented her usual stuff from the auto-antibody SC v pandas vs. normal and Cam K II numbers. New was the fact that she is correlating certain antibodies and D1 or D2 to symptoms. I don’t have the numbers (sorry! – anybody catch them?) it was something like high anti- Lyso usually present with tics. And Hi D2 with anxiety (and pandas in general) I think they want to focus on the D2 because they can develop drug therapies to regulate this. (this is my theory, not what was said).

 

She said they are trying to get he lab off the ground – and they even had a slide with a name on it…something like Molecuary Labs.

 

I asked her about raised Cam K in non-pandas recent strep kids, because she has said that the median for that is 135, and she said that the range doesn’t really go above 139 or so for those kids.

 

Thienneman:

Psychiatrist. Talked about barriers to diagnosing pandas. Even Swedo said “there are about 10 good pandas doctors in the US” . Theinneman also talked a bit about CBT in conjunction (if necessary ) a low does of SSRI (or other) when kids are ready for it being most helpful. She borrowed a graph from a marketing book called “Crossing the Chasm” on Early Adopters. The same mentality is needed to cross the chasm in the medical community. If you read that book, or “the Tipping Point” both are similar – and the medical community is no different. It takes time, and spin and a certain amount of serendipity for a disease or disorder to get recognized and treated on a wide scale. Any doctors we are currently dealing with are “Early Adopters”. At least from the standpoint of seeing the possibility that things aren’t what you thought. She talked about the evolution of accepting disorders of the mind as diseases of the body/brain. What’s scary is just how recently this change has occurred.

 

Theinneman also talked a bit about CBT in conjunction (if necessary ) a low does of SSRI (or other) when kids are ready for it being most helpful.

Thienneman used to be an internist. One of the barriers to diagnosing something that doesn’t fit the mold, or even considering a different mold, is just BEING a pediatrician. They have 10-15 minutes per patient allotted on usual days. I loved her line “Hey, the biggest reason I switched from internal medicine to psychiatry is - I get an hour!” “and even that sometimes isn’t enough”.

 

She had some graphs of her pandas patients and symptoms before and after interventions – interventions include IVIG, Anti-inflamatoris, antibiotics, and steroids.

 

Symptoms she listed were: (sample size of approx 16) –

OCD – Resolved incompletely YBocs prior at 0, at worst (27-43, aprox median 33) median afterwards about 17.

Anxiety disorder – mostly resolved. Range before 0-22, at worst 3-70, and after treatment 0-32, median about 9

Clinical Depression – partially resolved. The numbers not on the chart, but about 8 of the 16 were significantly above where they started after treatment. At worst they were 4X what the normal range is, and at the end the median was around 2x what prior median was.

Bipolar – mostly resolved, median at start was about 8, at end about 12, at worse about 25. All 16 were subclinical in the after treatment category (below 25)

ADHD – resolved- it looks from that chart like they all went up 4-5 times the before number at the worst – and about 8 of those were in clinical range, but they all but 3 went back down, and those 3 either above clinical level, or just under before treatment.

Oppositional behavior – went up 3X the prior rating at worst, and largely resolved (median about 2x the prior rating, but in subclinical for most kids) However 4 kids that were subclinical rated themselves in clinical range after treatment.

 

Response to interventions:

15 kids – antibiotics, more than half - Very much improved, a third improved, and 20 percent or so no change.

 

Anti-inflammatory – 10 kids

One kid very much improved. 5 somewhat, 2 temporarily, 2 not at all

 

IVIG – 7 kids

2 somewhat improved 5 very much improved

 

Steroids – 8 kids

About 3 – no improvement, 2 somewhat, 1-2 very much, 1 temporary

 

 

Hornig:

Yes – she talked about CLIP. She was pretty amazing. Something I noted when she talked about the mouse study, was that they have to give the mice a drug to open the blood brain barrier, otherwise won’t work. She also talked about Serotonin receptors in the GI track and GI function and sleep. It seems most of current work is Autism. Sorry – didn’t take many notes during her talk and it wasn’t on the CD they handed out (did you think I got all the detailed stuff above from my notes?! – a FEW of the presenters made their slides available on the symposium CD )

 

She cited the best quote of the symposium. Einstein when he was teaching – A student said “all of the questions on that test were the same as last year”. “True” said Einstein, ”but, all of the answers are different”.

 

Murphy:

Mostly talked about antibiotics. I’m running out of steam here, so refer to others notes on her talk. It was good too.

 

I wish there were more time for Q and A on day two. I had to leave for airport – I left during presentation on woman that groups different symptoms of Lyme disease into different categories (we’re talking about very large amount of data from very large sample group).

 

I did have the opportunity to ask about the kids that did the original study with Swedo – and what became of them as adults. She said the all got better. But she believes that they got better because they all got treatment. We didn’t talk about “how much better” – a researcher may think that 20% better is better. She and Cunningham both said that early treatment is important, the longer it goes unchecked, the more difficult to correct. This would consistent with what I heard about the research in the other disciplines presented on day 1.

 

I wish I could convince more people to run, don’t walk, to participate in the study. If any of you are reading this and your child might have pandas - Its your best chance for a full recovery for your child, from the best doctors in the world on this disorder. Get into the IVIG study at the NIMH.

[eljomom]

WHY...WHY...WHY would a top pandas specialist, who diagnosed my child with pandas/pitand.....NOT treat aggressively then???? If early treatment is key, why do these specialists (well, not all of them)...even Swedo, say that IVIG and PEX are reserved for kids who are "debilitated?"

 

Also, how does one "reboot the immune system?" (per Dr. Rose)

 

"IVIG/PEX---success rates 65% and 45%".....that doesn't sound too great???

 

The PANS criteria only lists sudden onset of ocd, not tics. Did Swedo talk about the tics at all?

 

"Autoimmune can follow disease by weeks, months, years..."---makes you wonder about chasing around "hidden infections" or raised IgG with antibiotics, especially when they arent' doing much. Could be that the infection is GONE< but the autoimmunity remains?

 

"RF" was described as "chronic." So if someone has/had rheumatic fever, it is a chronic condition??

[norcalmom]

IVIG and Pex - you can read that study. This is the original data from 20 years ago.

yes - their work is all about infections that have resolved. The autoimmune conditions that exist after they are gone. So yes, that is exactly what is going on. That is why they don't feel comfortable saying all kids should have antibiotics long term. They need to study that. Many parents report that kids just do better on antibiotics for some reasonl. They aren't sure why. They theorize it goes beyond the actual active infection and may have more to do with other properties that antibiotics have - some are antiinflamatory, or immune modulating in some ways that isn't clearly understood.

 

Swedo's original study focused on tics, and now seems she is try to distance pandas from tics due to controversy with tourettes people, and tics in general. You can't define tics as overnight onset or not, because they are always abrupt. She does list them as a comorbid symptom - "motor abnormality"

 

I don't know if RF can become chronic. It is likely to come back if antibiotics are not used first 3-5 years after diagnosis according to this site:http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004388/http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004388/

[hawks]

Many, many thanks to all who attended the symposium and for taking notes as well as sharing. We are blessed to have these scientists/researchers/doctors working on these complicated illnesses.

[T_Mom]

Thanks for the GREAT notes!!! I wish I could have been there.

[tpotter]

Many, many thanks to all who attended the symposium and for taking notes as well as sharing. We are blessed to have these scientists/researchers/doctors working on these complicated illnesses.

 

 

Yes we are very lucky to have these scientists/researchers/doctors working for us. The doctors who have jumped on board are, literally, lifesavers, and those of us who have been around multiple years knows how impossible it was to find anyone even just 3 - 4 years ago. If you get a chance, thank them. It can't always be easy for them, because they have to deal with the "mainstream" thinking they are crazy! (but we know better...they're angels.)

[smartyjones]

Thienneman:

Even Swedo said "there are about 10 good pandas doctors in the US" . . She borrowed a graph from a marketing book called "Crossing the Chasm" on Early Adopters. The same mentality is needed to cross the chasm in the medical community. It takes time, and spin and a certain amount of serendipity for a disease or disorder to get recognized and treated on a wide scale. Any doctors we are currently dealing with are "Early Adopters". At least from the standpoint of seeing the possibility that things aren't what you thought. She talked about the evolution of accepting disorders of the mind as diseases of the body/brain. What's scary is just how recently this change has occurred.

 

 

thanks norcal mom for the great info!! i checked out some of the slides from the link on pandasnetwork.org. do you know if there is any slide or any direct quote from Swedo about '10 good pandas docs"?

So the slide is an basicall used to state that we are all in the chasm as far as pandas?

 

thanks!

[eljomom]

i tried the link on pandasnetwork and it didn't work for me. Can someone post it here?

I am interested in the 10 good docs too.

[tpotter]

Thienneman:

Even Swedo said "there are about 10 good pandas doctors in the US" . . She borrowed a graph from a marketing book called "Crossing the Chasm" on Early Adopters. The same mentality is needed to cross the chasm in the medical community. It takes time, and spin and a certain amount of serendipity for a disease or disorder to get recognized and treated on a wide scale. Any doctors we are currently dealing with are "Early Adopters". At least from the standpoint of seeing the possibility that things aren't what you thought. She talked about the evolution of accepting disorders of the mind as diseases of the body/brain. What's scary is just how recently this change has occurred.

 

 

thanks norcal mom for the great info!! i checked out some of the slides from the link on pandasnetwork.org. do you know if there is any slide or any direct quote from Swedo about '10 good pandas docs"?

So the slide is an basicall used to state that we are all in the chasm as far as pandas?

 

thanks!

 

I don't remember her specifically saying: "10 good docs", but I do know she said that there were only maybe 10 docs who are treating PANDAS (my understanding was that she was talking about everyone we know.)

[saidie10]

I asked her about raised Cam K in non-pandas recent strep kids, because she has said that the median for that is 135, and she said that the range doesn’t really go above 139 or so for those kids.

 

This was a huge statement for me. I have been truly hung up on my younger son's CamKinase of 179. He is not "classic" PANDAS presentation with the sudden onset of things like his brother was. I mean, his brother simply changed, like a new personality at the age of 5.5. My younger son truly reacts to strep with PANDAS symptoms though, but his immune system must be stronger than his brothers as he seems to recover after the normal treatment for a current infection (although his baseline in between episodes is getting worse). I now feel confident he is PANDAS too and Dr. C's statement helped me get some resolution on that. It helps with the naysayers in the family who always want to tell me that he is just the "problem" child. Those people can just kiss my butt now! Not that I want to be able to say "I told you so" and I am not happy at all he is likely PANDAS too like his brother, but it definitely helps me know I am not crazy when I am protective of my child who is having a rage and everyone just wants to just look at me as if to say "why aren't you spanking him, why can't you control your child". UGH! I have always known something was not right with him. The terrible twos are not supposed to get worse with each passing year...

[smartyjones]

I don't remember her specifically saying: "10 good docs", but I do know she said that there were only maybe 10 docs who are treating PANDAS (my understanding was that she was talking about everyone we know.)

 

 

thanks. when i talk to people, i usually say there are about 6 docs in the country who know what's up. i guess i just found it so disheartening to actually hear her say about 10. i was just thinking if it was an actual quote i could use it to help the school understand where things stand with this. thanks.

Edited October 30, 2011 by smartyjones

[norcalmom]

The "about 10 good pandas Doctors" was a comment she made, not a slide, not a subject for the presentation. I don't recall the context exactly anymore - it was probably during Q and A, or perhaps she was explaining to the room what parents and kids go through to get treatment and diagnosis.

 

I'm kinda OK with 10 - if they are somewhat geographically dispursed, And I think its growing. Two years agao I felw from CA to Chicago for treatment, not there are 2 docs within 3 hours (and actually three if you count our psychiatrist that made our diagnosis - who now is working with an immunologist across the street form her). I prefer this "specialist" model- regular pediatricians would know enough to refer you to a pandas specialist, and then the specialist does the all the testing and treatment. There is too much to know for the pediatrician to do much more than refer your child on. And most of us know this because our children have been sent on, and on, and on, before finding a pandas - knowledgeable doctor.

 

The problem is the NIMH needs to give the pandas specialist designation to a group of doctors, so that our pediatricians know where to turn when they suspect a case of pandas.