September 2010
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. Four families near Palo Alto, California – Stanford University – all developed PANDAS near the same time in 2007. We found each other through one caring local Neuropsychiatrist and a blog.
Today, the number of PANDAS children has grown to over 600+ 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. Over the next year, I hope parents or doctors will contact me/us with corrections and additions to this website… the ideas are warmly received.
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 P.
So grateful to have found this page. My 4 1/2 year old son was diagnosed with PANDAS 3 months ago. It has been a traumatic experience for all of us. I feel like overnight my happy adorable little boy vanished and was replaced by a moody, irritable child with motor/vocal tics, insomnia, etc. My heart breaks each day as I watch him suffer. Antibiotics helped but he quickly had a recurrence of strep (we only knew due to the tics worsening- no other strep symptoms). We are awaiting to meet with a neurologist and then figure out what’s next. Does anyone know of a doctor in the NY area that may specialize in PANDAS? Feeling so lost… Thanks and God bless you all.