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PANDAS Network .org
 Newsletter 
New, Expanded Provider List,
15th Anniversary of PANDAS
2/4/2013
In This Issue
New Provider List
15th Anniversary of PANDAS
Important Links
  
 

We are happy that momentum is growing in the PANDAS-PANS movement. Parents and doctors are working in Massachussetts to enact legislation for IVIG coverage. PANDAS Network. org continues to receive numerous new requests for treatment information every month. In the spirit of this growing awareness: in this newsletter, we acknowledge our 15 years of progress in PANDAS awareness AND we introduce an expanded medical provider list.

 

PANDAS Network. org has many things we are attempting to launch in 2013, lots of parents working hard. We will keep you informed. There is still much work to be done, but so many mountains have already been moved. Please remember things are better now than before while we all strive to make things even better.

 

Sincerely,
Diana Pohlman, Vickie Blavat, and the Volunteers at PANDAS Network .org

NEW PROVIDER LIST on PANDAS NETWORK .org!

 

A revised, expanded PANDAS/PANS Provider List is now available on PANDAS Network.org! Each of these providers' offices has been contacted to ensure their willingness to be recognized as a PANDAS/PANS provider. We have broken the list into TWO Categories -- Leading Physicians and "PANDAS friendly". We have defined "PANDAS friendly" as being supportive of PANDAS, but may not have clearly articulated their treatment plans. Treatment (including initial and ongoing antibiotics, IVIG, or other) may vary. Also, there are a variety of specialties listed. We encourage parents to educate themselves before a visit and try to determine if it will be a good fit for their child's possible needs.

 

Although the providers may be helpful, there are only a handful of physicians that understand the complexity of this disorder. Those doctors can be found under the Leading Physician section of the list.

 

The new list is a compilation of the original PANDAS Network.org list, requests from providers to be added, and direct inquiry by volunteers to providers that have been recommended by parents. We would like to thank Carol, a PANDAS Grandmother, who contacted the majority of providers for us by phone. This has been a labor of love by many. We hope the new PANDAS/PANS Provider List helps families receive local help and creates a quicker turn around from onset to treatment.

 

We encourage other websites to thoroughly review the providers they have listed.

 

In the future, we hope to compile information packets to send to each provider listed. Contents and cost of that project are yet to be determined.

 

Click on the following link to be taken to the PANDAS Network.org PANDAS/PANS Provider List:

 

http://pandasnetwork.org/resources-new-research/providers/

15th ANNIVERSARY of the DISCOVERY of PANDAS!

 

February 2013 marks the 15th anniversary of the release of Dr. Swedo's Landmark Paper on PANDAS and the one year anniversary of the release of the Dr. Swedo's White Paper on PANS.

 

Thank you to all the researchers, providers, and advocates who continue to push the envelope and strive for the recognition of this disorder.

 

Children deserve a correct diagnosis, proper treatment, and a full recovery. We believe that every day we are closer to that being a possibility and reality for all.

 

Dr. Swedo's Landmark Paper on PANDAS: http://intramural.nimh.nih.gov/pdn/pubs/pub-3.pdf

 

Dr. Swedo's White Paper on PANS: http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf