International OCD Foundation

[TiredMom]

FYI Parents,

A while back I had posted that PANDAS information had been taken off of the revised OCD Foundation Website. Laura had a contact person that worked closely with this organization, and confirmed fo us that they were upgrading the website in stages and that PANDAS information would be forthcoming in the next phase. We were all encouraged at the time to contact the website with our input/concerns. I am posting below the response I received today - it looks good. I'm thinking they should get a look at the great FAQ and NIMH proposal Buster has put together...

-Peggy

 

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Peggy,

 

I agree with everything you said below. We believe it is important to get information about PANDAS out there! As you know there is a lot of contradictory information out there about PANDAS. I am currently in a discussion amongst members of our Scientific Advisory Board and parents of PANDAS diagnosed children about what information is going to be the best to get out there.

 

Evelyn Stewart - a pediatric OCD researcher and therapist - is currently spear heading the writing of this information. She holds appointments Massachusetts General Hospital, McLean Hospital and Harvard Medical School. She works closely with Dan Gheller and Michael Jenike. She is the chair of the Pediatric OCD Committee on our Scientific Advisory Board which also includes individuals like Aureen Wagner and Fred Penzel who are very senior in the field. I am confident that when information about PANDAS goes up on the website that it will be clearly thought out and based on the most recent research.

 

Thank you for your feedback. Please let us know your thoughts as we continue to add information about PANDAS to the website.

 

Jeff Szymanski, Ph.D.

Executive Director

International OCD Foundation

 

Phone: 617-973-5801

Fax: 617-973-5803

email: jszymanski@ocfoundation.org

 

www.ocfoundation.org

[mama2alex]

Thanks for posting this Peggy! Here's the response I received, with my response below:

 

 

Jennifer,

 

I think there is a group that has dedicated themselves to a writing campaign to us! You are the fourth person in the last couple of weeks to contact me about this. I want to start off by saying that I completely agree with you about the importance of having information about PANDAS on our website. As you know there is a lot of contradictory information out there about PANDAS and I want to make sure that the information we repost on the website is accurate and up-to-date.

 

For the last couple of weeks I have been involved in a discussion amongst members of our Scientific Advisory Board and parents of PANDAS diagnosed children about what information is going to be the best to get out there. We are hoping to get a "fact sheet" about PANDAS up soon. We will then have a series of expert opinion articles that will go up as well as some first hand accounts by parents. In addition, we are in the process of completely retooling the old "Organized Chaos" website devoted specifically to pediatric OCD issues and for parents.

 

Evelyn Stewart - a pediatric OCD researcher and therapist - is currently spear heading this endeavor in her role as the chairperson of our Pediatric OCD Scientific Advisory Board Committee. Dr. Stewart holds appointments at Massachusetts General Hospital, McLean Hospital and Harvard Medical School. She also works closely with Dan Geller and Michael Jenike. In addition, the Pediatric committee includes individuals like Aureen Wagner, Eric Storch and Fred Penzel who are very senior in the field. I am confident that when information about PANDAS goes up on the website that it will be clearly thought out and based on the most recent research.

 

Thank you for your continued patience and please give us feedback about the information you end up seeing on the website in the near future.

 

 

Jeff Szymanski, Ph.D.

Executive Director

International OCD Foundation

 

Phone: 617-973-5801

Fax: 617-973-5803

email: jszymanski@ocfoundation.org

 

www.ocfoundation.org

 

My response back:

 

Thanks Jeff. Yes, a lot of PANDAS parents are now in communication and the group has grown considerably since Beth Maloney's book came out.

 

I agree it's important to base your site's information on research. I hope you have contacted Susan Swedo and Madeleine Cunningham in regard to this.

 

However, due to the presumed rarity of PANDAS, the research in this field has been severely underfunded. I hope you will also consult with the doctors who are leading the field in treatment. I believe much has been learned in the past few years by treating these kids and observing the responses. For this I suggest you contact Dr. Elizabeth Latimer, Dr. Miroslav Kovacevic and Dr. Rosario Trifiletti. If you need contact information for any of these doctors, please let me know.

 

Since you are working with Dr. Gellar, I imagine one of the parents you are speaking to is Beth Maloney. I hope you are also reaching out to other parents who's children have been more recently diagnosed and treated, and who live in different areas of the country. This disorder does not have one uniform presentation, so different perspectives from different areas of the country and parents who've been successful with different types of treatment would be valuable.

 

I would also highly recommend you include Diana Pohlman, founder of PANDAS Network, in your parent group. Her son is fully recovered from PANDAS and she has personally spoken with over 300 parents who are fighting this disorder. She is also in direct contact with many of the leading doctors and researchers.

 

Thanks so much for getting back to me and for updating your site with information on PANDAS.

 

Best regards,

Jennifer

[thereishope]

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