Hoping for a summary of the PANDAS conference

[EAMom]

thanks norcalmom!

[DeterminedMomVA]

Thanks Norcalmom! That was great info, and just enough info to satisfy my need to know generally what happened at the meeting.

[AmySLP]

I have never attended a professional seminar or multiday conference at which I've been told not to share info...interesting. I have some special certifications in my field (speech -language pathology) an had signed contracts that I understood that only certified therapists could perform the techniques...in others words do not train someone else or share handouts.

 

Didn't realize that this would be a controversial topic....I was surprised there was no summary or sharing. Now I know why!

 

Hoping dr. T. will share some info when we see him next week.

 

 

Amy

[EAMom]

This is from one of Beth Maloney's blasts (note, she mentions $75k...I heard elsewhere that Dr. C has since got the $):

 

We were asked not to discuss the actual presentations in any detail as it might interfere with the presenters ability to publish their research, so I will just write about the conference itself. I’ve included photos at the end of this email to help you feel connected.

 

 

The conference was absolutely stellar! It was attended by researchers, physicians, scientists, professors, moms, and dads from all over the United States and across the globe. There were physicians already on board with PANDAS, those with different opinions, and those who came to find out what it was all about. I think there were more than a few "newbies," or those who previously held unfavorable positions, who walked away knowing that PANDAS is not a fiction; the presentations were compelling.

 

 

It was a tremendous opportunity to spend time learning and sharing with one another, and so moving for me to have the opportunity to personally meet and get to know so many who have emailed. Parents introduced themselves by their stories. "My son is the one who wrote the rap song," - "I'm the one who lives in England," - "I'm the mom who was accused of Munchausens," - "I'm the mom from Saudi Arabia, who emailed when I saw your story on television there," - "My son is the one in the video from last night," - "I'm here from Denmark," - "My son is the one who ended up in jail." They told me more about their lives and asked me more questions. "I'm not a doctor and I can't give medical advice," was always my opening, "but if this were my child here's what I would do..." Parents left our conversations with action plans. And so many said that reading my book had empowered them to look for and find the answers they needed, knowing for the first time that it's okay to question a doctor. Wow! I felt great!

 

 

Each morning the conference started with breakfast and by 8:00 or 8:30 the research presentations were under way. On Monday the presentations went until 10:30 that night, including the panel for parents. Tuesday we were back at it early and didn't wrap up until 6:00 pm. After each presentation, the presenter took questions from audience members. They were all so patient and kind in answering all the questions asked about sick children, and about how their research or treatment might have an impact. No one was turned away. Some of the descriptions that the parents presented of their sick children were heartbreaking, and every doctor did their very best to help.

 

 

Dritan Agalliu, PhD, who organized the conference - and those at UCI who helped him with the arrangements - did a remarkable job of putting it all together. There was never a glitch. Shuttle busses ferried participants and presenters back and forth from the Newport Beach Hyatt to the Beckman Center at UCI. We shared coffee breaks and delicious meals throughout the day and evening. Meals were served buffet style along a walkway leading to a friendly outside patio. The casual gatherings for meals, around the mission style furniture, led to informal discussions of what we had learned and where we all hoped this would go.

 

 

Dr Mady Hornig brought me up to date on all the ideas she has for more research. Dr Tanya Murphy mentioned some of the things she learned at the conference as so exciting that it made her want to start exploring right away. Listening to the two of them banter, I felt caught in the middle of a brainstorm.

 

 

Dr Madeleine Cunningham explained all about her testing. She was terribly disappointed to let us know that the opening of her lab is being delayed due to funding. At the last minute, three investors (each due to contribute $25,000) pulled out. If anyone has any ideas about helping her to raise that remaining $75,000 please don't be shy; reach out to her. Madeleine-Cunningham@ouhsc.edu She is always so personally kind to me. I would love it if you have ideas on how to help her.

 

 

Dr T presented his alternative fever response theory and pointed out that PANDAS has been around since the 1800's. Dr. K shared his own insights. There were new voices, too. Paul Patterson PhD from Caltech presented on the relationship between maternal health and autism. Victor Nizet MD from UC San Diego, and Edward Kaplan MD from the University of Minnesota both spoke about strep. Dr. Kaplan pointed out that the focus should be a rise in titer, not necessarily an elevated titer (while acknowledging that sometimes the titer doesn't rise). Dr. Thienemann shared the somewhat distressing history of psychiatry. Dr. Agalliu presented about the changes to the blood-brain barrier in diseases of the central nervous system. Gerald McGuire MD discussed the link between stuttering and strep, and there were so many, many more. The presentations were multiple and fascinating. The large lobby off the auditorium was always full of people excitedly talking and exchanging information, where there was coffee - lots of it! The presentations offered much to absorb and even more to digest, and I know that pieces will come to each of us who attended as the days and weeks progress.

 

 

The point was made during one presentation that we need more research studies. "How many more do we need?" I asked. "There are hundreds of studies going back to the 1950s." Dr. Murphy added, "some from the 1920s." I kept pressing, "so what number will be enough?" Finally a UCI student sharing coffee in the lobby had the answer, "One more; that's it - just one." I burst out laughing.

 

 

The conference was sponsored by the Allergan Foundation. I was lucky enough to share dinner on Monday with Mitchell Brin, MD, who is Allergan Inc.'s Sr VP of Global Drug Development and Chief Scientific Officer. He explained that the Allergan Foundation is interested in exploring new areas of medicine. He was genuinely perplexed and found it hard to believe the many roadblocks that I described about the treatment and recognition of PANDAS. But when I reminded him of the story of stomach ulcers, it all seemed to click. He and I have different and complimentary ideas. He feels we need a scientific foundation. I'd like to find a celebrity. We agreed that both are necessary. "I wouldn't wish this on anyone,"" I said, “but if one of Angelina Jolie's children had PANDAS and she came forward, the battle would be over." We discussed that PANDAS would never be where it is today except for the fact that parents have relentlessly demanded that the disorder be recognized. When I asked him if Allergan would be interested in funding research, he explained that the ability of a pharmaceutic company to fund research is limited to developing a new drug that may treat an illness (I think I have that right). He said that this is a government limitation, but a scientific foundation devoted to the disorder would be able to fund. Dr. Brin said he’ll be reading Saving Sammy via audio book.

 

 

I think my personal presentation went well. As a speaker, I'm always relieved when no one falls asleep. The auditorium was packed, people were crying and clapping, and no one got up to leave or dosed off -- so I was satisfied. Everyone was thrilled to hear about Sammy's solid recovery and that he is living the life of a regular college guy. Illustrating how normal he is, I mentioned that he never calls his mother, and the whole group burst out laughing.

 

 

I outlined where PANDAS was when Sammy got sick, where we are now, and what I think needs to change for the future. One of my examples really hit home so I'll mention it here. If an elderly person is brought to the ER exhibiting behaviors that are out of character, the ER team's first thought is to look for an infection. When it's a child, the immediate thought is to look for a psychiatrist; this needs to change. And when a parent asked if it was okay and to question her child’s doctor if treatment was not producing results, my answer was, “It’s your job to do that; call the doctor tomorrow.”

 

 

Best of all, from my presentation came our next big idea. It was born of a question. Wendy Swyter of California stood at the microphone and asked what she could do to make a difference in the recognition of PANDAS. I said that we need the American Academy of Pediatrics on board; that it was not acceptable for the AAP to issue a bulletin stating that doctors should consider treating pre-schoolers with psych meds for ADHD behaviors, yet not support running a throat culture for strep. "What can I do about that?" she persisted. I answered, "The AAP needs to receive one thousand letters from parents." "Done!" she said. And so it will be. Wendy has signed on as the National Coordinator of the Campaign for Change at the AAP. Over the next few weeks, she will develop a plan and a template with key points to mention, figure out exactly who is the correct person to approach at the AAP, gather contact information, and then I will circulate it to all of you. You'll help us, won't you? It's always the personal stories that drive change. Hmmm...I wonder if we could get some coordinated PANDAS publicity out of this - "Parents Take On the AAP" - I'll ask our press liaison Kimberly Nelson, who has drafted our very successful Fill-in Press Releases.

 

 

[LNN]

Wendy has signed on as the National Coordinator of the Campaign for Change at the AAP. Over the next few weeks, she will develop a plan and a template with key points to mention, figure out exactly who is the correct person to approach at the AAP, gather contact information, and then I will circulate it to all of you.

[/i]

 

Wonder if a placing a petition on change.org would be simpler and reach more people - my family is a lot more likely to click once on a petition than to fill out a template letter. Anyone know much about change.org?

[Iowadawn]

Chandy's research sounds strikenly similar to Dr. Karen Newell-Rogers at Viral Genetics. I think it is something like Targeted Peptide Platform. Her work is very exciting.

[AmySLP]

Wendy has signed on as the National Coordinator of the Campaign for Change at the AAP. Over the next few weeks, she will develop a plan and a template with key points to mention, figure out exactly who is the correct person to approach at the AAP, gather contact information, and then I will circulate it to all of you.

[/i]

 

Wonder if a placing a petition on change.org would be simpler and reach more people - my family is a lot more likely to click once on a petition than to fill out a template letter. Anyone know much about change.org?

 

 

I think this is a great idea!! Could you email it to Beth?

[norcalmom]

"the ability of a pharmaceutic company to fund research is limited to developing a new drug that may treat an illness "

But - What about the ability to research the imapct of an existing drug on a new audience? I'm assuming that they would be interesting in expanding their sales - so if antibioics or IVIG works for pandas kids - why wouldn't they be researching it?

 

So, Alleran may not be the company we need to talk to - but I don't see why resources at the big manufacturers of (esspeically of IVIG, since a hand full of clients means big $ for them) can't put some pressure on the insurance providers....anyone have any expertise in this area of work, or connections with the companies that make the drugs...

 

I'm going to tart another thread on this.