Conference

[tpotter]

Any updates? I haven't seen any come through this whole weekend. How was it? Any new information?

 

[JoyBop]

I am still on my way home but all I can say is WOW!!! I was an outstanding conference and I learned so much from every single speaker. I will update more when I get home but I was blown away by all the new research, data and information I learned. All the docs shared what they have been seeing and their treatment recommendations.

 

I have so much faith that these doctors and scientists will get the job done to help us all get the coverage and treatment our children deserve.

[JoyBop]

Not every presenter gave their slide show presentation, but here are the ones that are available. I believe more will be posted later.

 

http://nepandasparents.com/resourcesandnews.html

[mommybee]

The conference was extremely well run and the speakers were excellent.We were told that all of the powerpoints would be uploaded onto the website. http://www.nepandasparents.com/resourcesandnews.html

[JoyBop]

One if the most interesting and exciting talks (although way over my head) was by a scientist, Dr. Agallui. It is mind blowing what this man has been doing. He has been able to replicate PANDAS in laboratory mice. He showed us footage of these infected mice, and was able to demonstrate their repetitive and hyperactive,compulsive behaviors. He was able to discover 3different ways the T cells get into the brain and where they go. I'm in a cell phone now so I won't go into my interpretation of what he said (as in not a scientist but I think I got the basic idea) He found that strep lives in the back if mice noses (simulate tissue as our tonsils). The T cells end up invading the brain through the back door, through the olfactory part of the brain. Once they get inside they weaken the blood brain barrier and allow more T cells inside. He was able to sho us actual pictures of the damage and location of foreign cells in these mice brains. Unfortunately we can't get these images of our kids brains as we could only get this info through biopsy.

 

All the doctors were brilliant. I have to say I knew nothing about Peggy Chapman but she gave some very straightforward and practical advice that I have ready implemented in my house. Her slide show is a great representation if what she spoke about. Have a look.

[rowingmom]

Thank you, I have sent this along to our PANDAS-friendly but unable to treat (Canadian practice) pediatric psychologist.

Edited November 12, 2013 by rowingmom

[kimballot]

I am seeing lots of updates, including pictures and quotes on facebook pages.

[Orion]

In one of the Q&A panel discussions, Dr. Cunningham was asked of the 1000 subjects in her study, how many had a strep infection? Mycoplasma Pneumoniae? Lyme? She answered that only 45% had strep, the remaining 55% had Lyme, Myco Pn, staph etc.

 

The Q&A moderator quickly followed up with asking the audience, how many here have Lyme [as part of the problem]?, and a good 60-70% raised their hands. (That's what it looked like from where I was sitting).

 

In any event, the audience response was so strikingly large, that some of the academics on stage for the Q&A were visibly startled.

 

~Orion

Edited November 11, 2013 by Orion

[LNN]

The Q&A moderator quickly followed up with asking the audience, how many here have Lyme [as part of the problem]?, and a good 60-70% raised their hands. (That's what it looked like from where I was sitting).

 

In any event, the audience response was so strikingly large, that some of the academics on stage for the Q&A were visibly startled.

 

~Orion

 

I'm glad they at least stuck around the conference long enough to have this realization. I was disappointed to hear that most left before the lyme presentations.

[JoyBop]

I didn't notice anyone leaving. The place was still packed for the Lyme presenters. Although there were some people that only attended Saturday it was still a full house.

[nicklemama]

The doctors and researchers sat through all the presentations on Sat and were there until the later part of Sun, when the presentations were very parent directed. I am so glad I went. There are no words to describe how powerful it was to be there. I managed to have personal conversations with Dr Swedo, Dr Cunningham, Dr T, Dr Agalliu, his post doc research assistant Erica, Dr Latimer, Beth Maloney, Dr Hubbuch (LLMD), and Diana Pohlman. Everyone was very friendly and welcoming. No big egos. All were very open to conversation. And I met some PANDAS Parents. Loved it.

[rowingmom]

In one of the Q&A panel discussions, Dr. Cunningham was asked of the 1000 subjects in her study, how many had a strep infection? Mycoplasma Pneumoniae? Lyme? She answered that only 45% had strep, the remaining 55% had Lyme, Myco Pn, staph etc.

 

The Q&A moderator quickly followed up with asking the audience, how many here have Lyme [as part of the problem]?, and a good 60-70% raised their hands. (That's what it looked like from where I was sitting).

 

In any event, the audience response was so strikingly large, that some of the academics on stage for the Q&A were visibly startled.

 

~Orion

 

It's too bad they didn't ask specifically about lyme coinfections. Especially bartonella.

[ChrissyD]

Co infections were covered thoroughly during lecture

[rowingmom]

Co infections were covered thoroughly during lecture

 

Sorry. Babesia, ehrlichia and bartonella were specifically addressed? I am looking through the PowerPoint presentations at the moment, but haven't gotten that far I guess.

[kimballot]

 

Co infections were covered thoroughly during lecture

 

Sorry. Babesia, ehrlichia and bartonella were specifically addressed? I am looking through the PowerPoint presentations at the moment, but haven't gotten that far I guess

Jeanne Hubboch slides - 6, 15-19. They taped the conference and if she signed a release for her talk, you will be able to hear what she said once it is finished.