Archive for the 'Blog Post' Category

In the Lymelight #3

So after hounding our physician for clarification of results, she told us it looked like a mild positive. (If you haven’t read before, we were Igenex + but according to CDC he was missing one band to be CDC positive).  She wanted to make absolutely sure he had it before she began treating him. She ran an epitope test. This
Read more…

In the Lymelight #2…diagnosis

I apologize for it being so long. I was having some website issues and then the holidays came. We have been busy here in Missouri. Tim Sorel screened the film My Kid Is Not Crazy here in St. Louis. If you live near one of the screening cities, take advantage of the opportunity. It had quite a few interesting pieces
Read more…

In the Lymelight

The world of PANDAS/PANS is heating up. Illinois has legislation and an advisory council for PANDAS/PANS, there have been numerous conferences (including the one in Georgetown followed by the gala for the premiere of the documentary, “My Kid is Not Crazy” by Tim Sorel, and October 9th is once again PANDAS Awareness Day across the country. Research is continuing…some children
Read more…

PANDAS and siblings

I hesitated to put this picture on this blog but I feel it is the “unspoken” story. This is in honor of the siblings who suffer along with the child with PANDAS. This is a picture of our daughter taken 3 weeks after joshuas first ivig treatment. She is 4 years old in this picture.  Maybe it is because I
Read more…

Documentary finalizing–need your help!!

So I assume most of you have watched the documentary teaser by Tim Sorel, My Kid is NOT Crazy. There is a facebook page and website for the movie (www.Mykidisnotcrazy.com). The filming is done! There is a kickstarter campaign that has raised the bare minimum to complete the film. This documentary will bring a HUGE amount of awareness to PANDAS.
Read more…

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
Read more…

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
Read more…

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
Read more…

Registration is open!! Click here to see flyer!!