When the cause is right the means will come.
-M.K.Gandhi
PANDAS Network.org – established July 2009
Dear Readers,
The information here has been gathered largely by a group of 20 parents whose children had the sudden onset of PANDAS in 2007-2008. Initially, four families near Palo Alto, California – Stanford University – all developed PANDAS near the same time in 2007. Over the past three years we have discovered 20 more families ill with strep and PANDAS-onset in 2007-8. We found each other through one caring local Neuropsychiatrist and a blog.
This PANDAS Network is managed by mothers of children who have struggled with PANDAS and overcome it through treatment with antibiotics and ultimately IVIG. We are have also built a small base of volunteers who will help answer your concerns.
Today, the number of PANDAS children has grown to over 1,000+ through this website. We are sure nationally and worldwide the number is much larger. The families are fanning out across the U.S. and now, Italy, UK and Canada gathering further research and finding doctors who are willing to help our children.
What you will find here is the result of each parent’s compassionate commitment to sharing information. Some of the parents are talented researchers and have done amazing work clarifying this understudied “orphan illness” – PANDAS.
This compilation has been edited by one mother with a child who became ill at age 7 who after treatment with antibiotics and IVIG is fully recovered. Of course, we are vigilant and uncertain that this good health will remain. We write and update with new research as time permits.
In light of the situation, I ask for your patience and tolerance if the information here is not thorough enough or incorrectly articulated. We will continue to update the site with current Research.
Physicians and researchers from top universities around the world have helped direct our research and have given hours of their time to help us save our children. They have contributed much of their energy and money as well. However, all physicians and parents names are anonymous at this point as I have not asked their permission to print their remarks.
I know everyone says this is a “rare” illness and, therefore, research is slow in coming. But the medical community is gradually turning their heads and hearts to helping our young children and if we continue to persist… as I think we will… this autoimmune illness will be correctly diagnosed – and an accepted practice of treatment will be established.
Respectfully,
Diana Pohlman, Founder and Parent Volunteers of PandasNetwork.org
Vickie Blavat, Administrator and Media Outreach