Documentary Teaser is out!!

Tim Sorel has been working very hard for several years on a documentary to tell the story of PANDAS children. Please share and support. The video work is done…they are adding the final touches and need support. Take 4 minutes and watch:

Web Conference

The Missouri Institute of Mental Health will be hosting a web conference on Wednesday, July 15 at 1:30. Beyond the Infection: Issues and Resources Relevant to Recovery with Principal Investigator Kelly Gregory. Dr. C. Alec Pollard will speak about the issues facing these children and I will be talking about our experiences with PANS. Copy and paste the following link for more information
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PANDAS in the Wall Street Journal??

Be on the lookout for an article in the Wall Street Journal about PANDAS. Our Missouri PANDAS/PANS co-president Kelly Wooldridge talks about her family’s experience and the upcoming Midwest Conference. We also have an article coming out July 22 in West NewsMagazine! Kelly and I sat down with features reporter, Bonnie Krueger, to give her a glimpse of the exciting
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PANDAS education confirmed in St. Louis

If you are waiting for a way for you and/or your physician to learn more about PANDAS/PANS, look no further! The Missouri PANDAS/PANS Parent Association (that’s a tongue twister)has confirmed a two day conference including presentations by Susan Swedo, MD (yes, there will be results from the NIMH IVIG study presented) as well as Dr. Cunningham among others. Physicians from
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Registration is open!! Click here to see flyer!!

Long Overdue Update

It has been a long time since our last post but it seems things are heating up in the PANDAS world…especially in St. Louis. Joshua is doing well. We finally have a local biomedical doctor who is able to keep him healthy and update his testing. We no longer have to make frequent trips to Kansas City. Our support group
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The Apple Tree

This past weekend I had an experience that has been on my mind all day. 2 years ago we planted 2 apple trees. I was so excited. I researched types of apples. I planted two because I learned about apple tree pollination. I even went out when the weather got cold and wrapped them in garbage bags so they wouldn’t
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Talking in Public

We recently had another support group meeting. Our group continues to grow. It’s nice to support other parents, but difficult to hear the struggles and continued lack of help from the medical community here. Another mother, whose son is recovering from 9 years of PANDAS, made arrangements for the two of us to speak at a local preschool. It was
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PANDAS Support Strengthening

We had another PANDAS support group meeting here Sunday afternoon. It is clear that the word is spreading and research is trickling in. One woman in the area went to a PANDAS convention in Irvine, California and brought back notes from all the leading researchers. It was exciting for all of us there to know that the research is coming.
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Organic Acid Testing

What a week! Yesterday, Joshua and I made a poster to send to the protest in Boston. It was in honor of a 16 year old PANDAS//PANS pt. who was taken from her family due to PANDAS symptoms. There is a gag order in place. She was removed from her antibiotics and gluten free diet (which helps PANDAS children). She
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