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OCF Conference this Friday


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ditto...what kimballot said :-)

Hi All--

If anyone is going to the OCF Conference this Friday, please join us for a chance to meet over pizza Friday night at Cafe Italia, 4 blocks from the Hyatt.

 

This will be a very informal affair, but give us a chance to meet each other and chat--We would LOVE to meet you!

DCMom and I truly hope to meet as many there as possible.

 

We plan to arrive at Cafe Italia between 6:00 to 6:15 pm.

 

Let me know if you are planning to come and I will make a reservation -- (there will be a few extra seats on the reservation in case you forget--JUST COME! )

 

I understand the concierge desk at the hotel has 15% off coupons if you would like to pick one up for Cafe Italia. Directions: go out the front door of the Hyatt and turn Right, walk to 23rd street, go Left and the Cafe will be on the right.

ADDRESS: 519 23rd Street South, Arlington, VA 22202-2517

(703) 521-2565

 

Best to all--

TMom

 

 

I am so jealous - I will not be there. Wishing you all a wonderful time full of information and friendship! Please post and let us know how things go!

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Which PANDAS docs will be speaking at the conference?

 

 

I spoke to Dr K recently and he said he will be there.

He told me there will be a big announcement while he is in Washington.

Stay tuned. :)

 

Well, I think you just got nominated to tote your laptop to the conference and post that ASAP!!!

:)

Any news?

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Really! Don't they all know we're waiting??? How long can it take to eat pizza?:lol:

 

Maybe we should ask EAMom if she thinks Buster is still talking:o

 

Cool, now there is an emotion decoder. I still wanna know how to get all of Chemar's cool little icons...

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I'm sitting here with my beer and cheese and crackers waiting. C'mon people! This better be good or is it going to be like Ralphie on A Christmas Story decoding the Little Orphan Annie secret message. "Drink More Ovaltine!"

 

 

 

Really! Don't they all know we're waiting??? How long can it take to eat pizza?:lol:

 

Maybe we should ask EAMom if she thinks Buster is still talking:o

 

Cool, now there is an emotion decoder. I still wanna know how to get all of Chemar's cool little icons...

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I did receive a quick email from my friend right at 5:30 -- she said Dr. L and Dr. K's speeches were the best...but I haven't heard any more. I know she was planning on going to the dinner.

 

I'm dying to know what the big announcement is!!

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I did receive a quick email from my friend right at 5:30 -- she said Dr. L and Dr. K's speeches were the best...but I haven't heard any more. I know she was planning on going to the dinner.

 

I'm dying to know what the big announcement is!!

Think they're still partying? :D

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I did receive a quick email from my friend right at 5:30 -- she said Dr. L and Dr. K's speeches were the best...but I haven't heard any more. I know she was planning on going to the dinner.

 

I'm dying to know what the big announcement is!!

 

 

OO my apologies, I shoulda said this.

It won't come during the conference.

It will come this weekend. Sunday.

Possibly Monday. It was going to happen while Dr K was in D.C. Convenience.

God, Im cagey. And I hope we're not disappointed. (which is why i'm keeping my trap shut)

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Hi folks,

 

There were some really excellent talks at the IOCDF conference. I'll post some comments and maybe others will chime in.

 

1) I deeply enjoyed Dr. K's presentation.

He was funny and a bit "out there" -- he presented that he has seen some 400+ patients with some 200+ that he identified as PANDAS and over 100 that he's personally treated. His success rate has been > 87% and he defines success as 75% improvement of symptoms at 3 months post treatment. What was fascinating was seeing the other doctors come for his talk. One of the items that might cause some on this forum concern was that he noted that "sudden onset" was a feature in 96+% of his cases. He also objected to the use of the term "comorbid" conditions and said that these other symptoms were just part of an pediatric autoimmune neuropsychiatric complex.

 

In terms of announcements, I didn't notice any announcement in his session -- but he said that he was headed over to the NIMH to talk there - so perhaps that is where the discussion will occur. Dr. K was very strongly in the IVIG camp and not real supportive of plasmapherisis.

 

2) Dr L also had a great presentation. Her presentation covered the cases she's seen. She was more in the Plasmapherisis camp. Tanya Murphy also attended this talk and she was in the antibiotics only camp. It was actually great hearing the different perspectives and why each held their perspectives.

 

 

3) Dr. Swedo was not able to attend and Dr. Leckman presented her slides (as well as his own). What was extremely refreshing was that Dr. Leckman announced a new grant that was either just granted or in final stages. This likely means that the Perlmutter/Swedo study from 1998 (i.e., IVIG vs Plasmapheresis vs placebo) will be repeated. This is great news.

 

4) Dr. Cunningham's work was just outstanding. She presented the science around molecular mimicry and presented two slides from an unpublished study from a university in Tel aviv that was studying transgenic mice and showed antibody targeting of the D2 receptor (I think I got that right). Bottom line great work.

 

The most amazing thing for me was seeing all the doctors we talk about together in one place -- talking to each other. I was also surprised by how complete the PANDAS track was -- it was a really good use of the day with something on PANDAS throughout the day. Whether for therapists, doctors, and parents. For me, that was the amazing thing and I know many parents on the forum worked to get the program together -- great job by the way.

 

Regards,

 

Buster

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I'm jealous. Wish I could be there. We had our conference all with Dr K on Wednesday and he mentioned that they there is no pandas/pitand difference - it is all the same thing and that there would be some news on that (maybe a new name and description for the disorder?) coming out of DC meeting.

 

Dr K confirmed we are ready for IVIG, no more tests or steroids needed...Just a willing immunologist which seems we will need to fly to Chicago for. He prefers we do it locally, but after 2 days on the phone with docs trying ot find an immunologist that will treat pandas - or can even recommend one that can ("I don't treat pandas, and I don't know of anyone that does...maybe you should call the neurology dept at Stanford..."....maybe you can try infectious disease at UCSF?"...Mayeb you could try doc X (that would be the doc that sent us to neurology at Stanford).

 

Our best hope is a letter from our phychiatrist to try to get us into Doc Lewis (who we know has done at least one pandas IVIG form this board). He doesn't even have any appointments til Sept. We want is done ASAP..we've been waiting to get to this point for a year. Otherwise its on a plane to Chicago to see DR K.

 

Why won't anyone treat our kids on the West Coast?

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One of the items that might cause some on this forum concern was that he noted that "sudden onset" was a feature in 96+% of his cases.

Sorry- I'm terribly quotation mark-challenged.

I discussed this very issue w/dr K live before dd10's ivig. This may turn out to be another definition issue like "cure." I said my dd didn't meet what is published as pandas criteria; no history of strep, no sudden onset. He stopped me in my tracks and said she did have sudden onset and we just missed it because it happened so young (around 2 y.o.: 2001). He said this is a big problem in the under 5 pandas child and that he and Dr. Swedo were working on more tailored criteria for this set of the pandas population. Teasing apart pandas symptoms and terrible twos and threes is no easy fete; it will be interesting to see what they come up with.

On the monkey map, I answered "no" to sudden onset, but Dr. K marked her down as "yes."

It seems to me it is important to somehow distinguish notable, obvious "sudden onset" in the over 5 pandas child versus the early onset, under 5 pandas child. Otherwise, we run the risk of parents with now preteens and teens who may be misdiagnosed dismissing pandas prematurely because everybody says they identified a "sudden onset."

Edited by JAG10
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Buster, thanks for taking the time to give us a review at the end of a long day!

And JAG, thanks for telling us about your conversation w/ Dr.K, re: early sudden onset.

 

Oh, and I absolutely agree w/ Dr.K about the "comorbids" likely being part of the PANDAS symptoms and not a separate disorder. I'd sure like to have information about his theory of IVIG "resetting" the immune system...I can't fathom how/why that would work and can't find any literature on it, either. I want to understand more about that.

Edited by peglem
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I didn't ask Dr. K that question so his answer might be quite different from mine. However, the two papers that seem to explain the IVIG situation are:

 

1) A paper that dopamine suppresses Treg http://www.jneurosci.org/cgi/reprint/24/27/6133

and then

2) A paper that IVIG enhances Tregs http://www.jimmunol.org/cgi/reprint/179/8/5571

 

I couldn't find a paper that connected the two but it's possible that IVIG is enhancing the Treg cells and going long enough to get the whole darn system back under control and reduce the dopamine load so the regular Tregs can do their job. This is just one conjecture at this time and hopefully someone else has been tracking this direction.

 

So PlasmaPheresis probably works by just reducing the antibodies. IVIG probably works by enhancing Treg cells that supress the bad antibody. In both case dopamine D2 receptots get less load.

 

Buster

 

 

Buster, thanks for taking the time to give us a review at the end of a long day!

And JAG, thanks for telling us about your conversation w/ Dr.K, re: early sudden onset.

 

Oh, and I absolutely agree w/ Dr.K about the "comorbids" likely being part of the PANDAS symptoms and not a separate disorder. I'd sure like to have information about his theory of IVIG "resetting" the immune system...I can't fathom how/why that would work and can't find any literature on it, either. I want to understand more about that.

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Gosh! Thanks!

 

I didn't ask Dr. K that question so his answer might be quite different from mine. However, the two papers that seem to explain the IVIG situation are:

 

1) A paper that dopamine suppresses Treg http://www.jneurosci.org/cgi/reprint/24/27/6133

and then

2) A paper that IVIG enhances Tregs http://www.jimmunol.org/cgi/reprint/179/8/5571

 

I couldn't find a paper that connected the two but it's possible that IVIG is enhancing the Treg cells and going long enough to get the whole darn system back under control and reduce the dopamine load so the regular Tregs can do their job. This is just one conjecture at this time and hopefully someone else has been tracking this direction.

 

So PlasmaPheresis probably works by just reducing the antibodies. IVIG probably works by enhancing Treg cells that supress the bad antibody. In both case dopamine D2 receptots get less load.

 

Buster

 

 

Buster, thanks for taking the time to give us a review at the end of a long day!

And JAG, thanks for telling us about your conversation w/ Dr.K, re: early sudden onset.

 

Oh, and I absolutely agree w/ Dr.K about the "comorbids" likely being part of the PANDAS symptoms and not a separate disorder. I'd sure like to have information about his theory of IVIG "resetting" the immune system...I can't fathom how/why that would work and can't find any literature on it, either. I want to understand more about that.

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