AO Conference

[MomWithOCDSon]

I just got back home from the Autism One conference a little while ago. I attended all the PANDAS track sessions today, and despite some unscheduled blips in presentors (Dr. Latimer had a family tragedy and could not attend or present), the presentations were very well done and, even to a 6-month-old "ACN hack" like myself, there was new information and some pre-existing information more artfully and clearly presented, as well.

 

Laura Matheos did an excellent job, presenting solo due to Dr. Latimer's absence. And the Q&A following Lynn Johnson and Dr. B.'s presentation was especially informative because we attendees really got a chance to get involved and ask some questions; unfortunately, many of the other presentations ran right up to the allowed minute, so Q&A tended to be either very brief (one or two questions) or entirely non-existent! Dr. Trifiletti packed a lot of information into his presentation, and Dr. Cunningham provided some insights into her research which were novel to me as of yet. I wish the sessions could've been longer, and especially that Swedo and Cunningham could have each had their own hour, rather than sharing one, because the time just flew . . . almost as fast as the technical information they were trying to share!

 

All in all, it was great to hear what everyone had to say and to share with some other families, too.

[kimballot]

I just got back home from the Autism One conference a little while ago. I attended all the PANDAS track sessions today, and despite some unscheduled blips in presentors (Dr. Latimer had a family tragedy and could not attend or present), the presentations were very well done and, even to a 6-month-old "ACN hack" like myself, there was new information and some pre-existing information more artfully and clearly presented, as well.

 

Laura Matheos did an excellent job, presenting solo due to Dr. Latimer's absence. And the Q&A following Lynn Johnson and Dr. B.'s presentation was especially informative because we attendees really got a chance to get involved and ask some questions; unfortunately, many of the other presentations ran right up to the allowed minute, so Q&A tended to be either very brief (one or two questions) or entirely non-existent! Dr. Trifiletti packed a lot of information into his presentation, and Dr. Cunningham provided some insights into her research which were novel to me as of yet. I wish the sessions could've been longer, and especially that Swedo and Cunningham could have each had their own hour, rather than sharing one, because the time just flew . . . almost as fast as the technical information they were trying to share!

 

All in all, it was great to hear what everyone had to say and to share with some other families, too.

 

Thanks so much for posting! Do we know if their presentations are going to be available for purchase or download?

[peglem]

So glad you shared! I've been wondering how it was going.

[MomWithOCDSon]

Thanks so much for posting! Do we know if their presentations are going to be available for purchase or download?

 

I don't know about download, but they are selling DVD sets of the entire conference, which I think are pretty pricey. When I go back tomorrow, I'll ask 1) what the pricing is, 2) if they'll be available for download and 3) if there'll be an opportunity, perhaps, to purchase only the "PANDAS track" as distinct from the rest of the conference. It is a massive undertaking, so I'm betting the full conference DVD's are expensive, but if there's any "sectioning" being offered, that should make it all more affordable. I'll let you know tomorrow.

[Stephanie2]

Did anyone take notes? I would love to know what info was presented.

Thanks, Stephanie

So glad you shared! I've been wondering how it was going.

[tpotter]

Has the word gotten out about voting? We were down to 21 (from 24 yesterday)...possibly because of the vets.

[MomWithOCDSon]

Okay, I'll try to respond to all:

 

- I tried to get the word out about voting; I wore my PEPSI REFRESH tag all day, both days, and passed out identical cards to folks I talked to throughout the conference. I also handed out badges to other people who expressed interest or who identified themselves as forum members and wanted one.

 

- I have notes from the sessions, but like any note-taker, I was focused on the things that really resonated with me, and not necessarily what might be of importance to all. There were a few new interesting "tidbits" that I picked up there that I haven't heard prior, so I'll try to highlight those on another post.

 

- There are DVD-Roms and CDs available for the conference, but they are not going to make any available for download this year. Video DVDs of the entire conference are $995, and computer DVD-Roms are $575. The nice thing, though, is that you will be able to order just the conference sessions you are truly interested in for $20 each. Dr. Cunningham, Laura Matheos, Dr. Trifiletti and Beth Maloney CDs will all be available at that price; however, these are the only three PANDAS presenters who apparently gave AO permission to tape their presentations, so the others (namely Swedo and Lynn Johnson/Dr. Bouboulis) do not appear to be available, at least not via AO.

 

Today's PANDAS session was limited to Beth Maloney, but like the Lynn Johnson/Dr. B. session yesterday, the highlight for me was the Q&A which followed. Like a living, breathing forum thread!

 

Like I said, I'll try to post some of what I caught as "new" and exciting on another thread, but if you have any specific questions, feel free to post or PM me!

[MomWithOCDSon]

I also forgot to mention . . .

 

I found Dr. Cunningham's talk especially interesting, and her Powerpoint presentation had some great slides in it. It's my concern, however, that even on a CD video shot from the back of the room, those slides will not be clear enough.

 

I've emailed her to ask if there's a possibility she would share her Powerpoint. As soon as I hear back, I'll post again!

[EAMom]

did anyone (Swedo?) say anything about long term prognosis?

 

What about young adults (who had PANDAS as children), what happens if they get strep etc?

[MomWithOCDSon]

did anyone (Swedo?) say anything about long term prognosis?

 

What about young adults (who had PANDAS as children), what happens if they get strep etc?

Unfortunately, the presentations were VERY rushed, as in Swedo and Cunningham actually shared a single session of one hour and 15 minutes, and even with that, they did not have time for a Q&A period, and they both rushed out of the room to catch flights immediately following the presentation.

 

A lot of it was "PANDAS 101," basic background, history, theories currently under study, etc. I was told that, because AO was hosting our little corner of the world, some emphasis was to be put on the "basics" rather than some of the more advanced info some of us would like to see because there would be autism folks in the sessions who were new to the whole concept.

 

Swedo did not get into long-term prognosis or about how aging or even puberty play into PANDAS, except to admit, on the heels of another person's question, that some may grow out of it, "we just don't know." Here're the key "new" points I took from Swedo's talk:

 

-- She believes plasma exchange is the best way to address PANDAS and reach cure/remission; however, she knows that there is a perception problem and a cost problem with PEX and that, therefore, many families will not consider it an option. So she indicated that her next recommendation would be IVIG. This marries well with what Dr. K. told me earlier this month in terms of a paper he and Swedo are working on, and a presentation to be made in July in Washington, D.C.

 

-- She acknowledged that once triggered by strep, subsequent exacerbations could be triggered by viruses and/or other infections that drive immune response

 

-- Among comorid conditions and symptoms among PANDAS patients, her top ones were ADHD (40%), OCD (40%), choreaform movements (95%), emotional lability (66%), "school changes" (60%), personality change (54%) and separation fears (40%). Sorry, I would've gotten all of them if I could've, but the presentation moved at a brisk pace, and so did her Powerpoint slide show!

 

-- She also talked briefly about "Symptom Clusters" in PANDAS. THe on I managed to get down before the slide changed was ADHD with emotional lability and cognitive changes.

 

-- She noted a genetic susceptability component to strep, OCD and tic disorders

 

-- There is a parallel trial of azith versus penicillin currently underway

 

-- Two particular sections of the basal ganglia appear to be impacted in PANDAS: the caudate and putamen. An MRI displayed that the caudate in a PANDAS child was approximately 20% larger than in the normal child

 

-- PEX, she says, reduces antibodies by 90%, hence why it is her first choice for long-term healing

 

Sorry, not much else to report!

[EAMom]

[-- She believes plasma exchange is the best way to address PANDAS and reach cure/remission; however, she knows that there is a perception problem and a cost problem with PEX and that, therefore, many families will not consider it an option. So she indicated that her next recommendation would be IVIG. This marries well with what Dr. K. told me earlier this month in terms of a paper he and Swedo are working on, and a presentation to be made in July in Washington, D.C.

 

well..that is some progress since at the DAN! conf. from 1-2 years ago she seemed to think IVIG was too dangerous

 

-- There is a parallel trial of azith versus penicillin currently underway

 

whoa...what's this about a trial? Why don't we know about this?? How can there be a trial if nobody on this forum is in it?

 

 

Thanks for the summary MomWithOCDSson!!

Edited May 30, 2010 by EAMom

[EAMom]

whoa...pricey stuff...

 

IMO the videos should not be more than actually attending the conference!! THat is crazy.

 

do you know...was it illegal to tape the conference on your own? I would think it would be easy to do with some on the sly with of those small video cameras (Flip?).

Edited May 30, 2010 by EAMom

[Iowadawn]

A question regarding PANDAS and others in the family/clearing the family. What can someone share of Dr. B's take & approach on this matter??

 

Dawn

[kimballot]

I also forgot to mention . . .

 

I found Dr. Cunningham's talk especially interesting, and her Powerpoint presentation had some great slides in it. It's my concern, however, that even on a CD video shot from the back of the room, those slides will not be clear enough.

 

I've emailed her to ask if there's a possibility she would share her Powerpoint. As soon as I hear back, I'll post again!

 

With the price they are charging for the video, they should have used camtasia or some other software that allows you to watch the actual slides on a split screen, with the presenter on the other end... We'll see

[smartyjones]

mom - fabulous learning vicariously through you -- thanks!