How was the IOCD Conference?

[KaraM]

Would love to hear an update from anyone that went!

 

Thanks,

Kara

[MomWithOCDSon]

Well, it's getting some press! I just got a Google alert on this moments ago!

 

PANDAS at IOCDF

[eljomom]

Will there be a way to listen to the talks by Dr. Latimer, Swedo, Cunningham and Murphy? I would even purchase if on MP3 or CD.

[kimballot]

Well, it's getting some press! I just got a Google alert on this moments ago!

 

PANDAS at IOCDF

 

Thanks for the link! Nice article! They talk about "thingpandas.com".... I think they mean "thinkpandas.com"... but when I go there it asks me for a password. Anyone know how to get a password or if this is something that would even benefit me? PM me if you need to.

[MomWithOCDSon]

Thanks for the link! Nice article! They talk about "thingpandas.com".... I think they mean "thinkpandas.com"... but when I go there it asks me for a password. Anyone know how to get a password or if this is something that would even benefit me? PM me if you need to.

 

Yeah. Unfortunately, that article was full of typos.

 

I don't know about the thinkpandas.com web presence; I just sort of assumed the quoted parent was someone who's active here and some might already recognize. Hopefully, they'll step forward!

[Kari_S]

Stepping forward......

 

Hi Everyone. My name is Kari Steinberg. Some of you know me as of two years ago when my twin (then) 5 year old boys both got PANDAS.

 

Long story short, I was shocked, as most of you are, that even in Los Angeles where we live I could not find a doctor to help me figure out what went terribly wrong with my kids, let alone what to do about it. After seeing many doctors and hearing all kinds of diagnosis, when I finally figured out for myself that it was PANDAS, the last straw for me was a conversation I had with a very well respected doctor that said to me " the only Pandas that exist are bears in China!" ! At that point, like many of you, I had to find help thousands of miles away.

 

My dearest friend Rochelle Fried, an LCSW, walked thru the whole nightmare with my family on a daily basis. She too could not believe we could not find a local doctor to help us. Thank goodness for Pandas Network, because if not for Diana Pohlman, I might never have had the resources and knowledge to get the help that I desperately needed for my boys.

 

As time went on and my children got better, Rochelle and I realized that while there are several websites out there, PandasNetwork.org particularly, and more recently Pandas-PitandAwareness.org, doing an amazing job of creating awareness and support to families suffering with PANDAS and PITAND, if everyone finally knows about it and they still can't get to doctors that are educated and wiling to help them, then the desperation, frustration and pain will continue and our children will not have the best opportunity to get diagnosed, treated and heal.

 

Additionally, when my boys were sick and could not go to kindergarten I too fought with teachers and a school system that had no idea what PANDAS was and/or what to do about it. I was luckier than many in that I was able to walk away from the public school and go to a private school that not only listened to me and believed me, but they allowed me to attend kindergarten with my kids for 4 months just so that they would be able to go. I was also lucky that I had the resources to go to a doctor 3000 miles away from our home. Many families with children who are in desperate need of help even more than I was, do not have any schools that will listen to them. They do not have the resources to travel to see a doctor and/or their insurance company won't cover the visit or the treatment. As we all know, most families not only have to face this terrible debilitating illness, but then on top of it, they have to fight with their doctors, fight with their schools and sometimes they have to work to convince the very communities they go to for support, such as their church or temple, to believe them!

 

ThinkPANDAS Inc. is a tax exempt organization whose mission is to increase awareness of the existence of PANDAS and PITAND in an effort to advance detection, treatment, and access to medical care for patients worldwide and to provide information, resources, support and advocacy for patients and their families.

 

In short, our main focus is to educate the global medical community, schools and clergy. We are also working (as we go forward and raise funds) to be able to provide insurance advocacy and legal aid for families who have to fight to get treatment covered and for families who are facing a social services system that does not recognize this illness and can/has caused even more trauma to an already devastated family.

 

Our goals are really to fill the gap between parents who are educating themselves and the professionals who need to be educated in order to help them.

 

Rochelle and I, as well as other members of our team, have been working on this for a long time now. In an effort to accomplish this goal we have been reaching out here and around the globe to encourage a collaborative body of scientific researchers and doctors to create a “study group” that will share their knowledge and work on Infection Triggered Neuropsychiatric Disorders, who might otherwise never speak. We are developing medical outreach education programs for the medical communities and hope to have news in the coming months on the development of the first global medical congress and call for papers on Infection Triggered Neuropsychiatric Disorders. We decided to put our toe in the water this past weekend at the IOCDF conference in San Diego California and take the first step to let the world know we are here. We debated about whether we should "announce" ourselves without having our site fully up and running. Our decision was to go ahead and let you all know who we are sooner rather than later. We felt the conference was a great place for us to have a chance to talk with both doctors, parents and kids about what we are doing, but also to hear thoughts and suggestions from them. We have been doing this in a vacuum for long enough. There is no mystery to our site not being up yet. We will have something up to show you in the next few days that will at least give you a flavor of what we are up to. The sections for Doctors, Schools and Cleary will take a little longer to "go live". It is our feeling that when we get these professionals to our site, we will have one shot with them to take this seriously and pay attention. Unless those sections are chock-full of a lot of hard science, vetted medical directives and reliable resources, we will lose them and they will not go back and worse, they might be even more unwilling to listen in the future.

 

So we apologize for not being completely "ready" to show the world everything, please know we are here working hard to do this right. We want to fight for you, for all of us, but we want to do it in a way that will have the most impact and be powerful enough to open the most closed minds.

 

Please check in with the site in the next few days. Register with us and we will let you know as soon as we are fully launched. You can also then expect an email from us requesting the contact information for any doctors, teachers, and clergy that you would like us to reach out to with information. We will then respectfully start the process of helping them understand what this is and what to do about it.

 

In the meantime, if you have any questions please feel free to contact us at 1-888-5-PANDAS or you can write to info@ThinkPANDAS.com

 

Warmly,

Kari

[kimballot]

Kari - thank you for sharing your story and all that information! It sounds like you and others have been quite busy working for all of us. Thank you! It is wonderful that you are giving back to the PANDAS community.

 

I do hope that, eventually, all of the PANDAS groups can find a way to collaborate to avoid duplication of effort.There is much work to be done and together we can make it happen. I cannot believe the dedication of the parents on this forum!

 

I look forward to hearing more about your organization - good luck with the website launch!

Edited August 1, 2011 by kimballot

[eljomom]

Hi Kari-

What is the password? It's asking for a password provided from the think pandas group?

 

Also, anyone know if there will be links to talks from the conference?

[browneyesmom]

Hi Kari! It was great to meet you at the conference; I look forward to the future as we each work to help PANDAS kids & families in complementary ways!